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!

Today is the 7th night that Ezzy will have spent in the hospital…crazy right?

It has been an interesting time, some moments surreal and others painfully apparent that we are missing part of our family.  Its in the morning when we would normally be all encouraging her to get her vest on or Kyre running to the fridge to grab her nebulized meds its real.  Its especially real when we sit down to eat a meal or have a snack and I reach for the enzyme bottle.

The moment that I knew we were all going to be okay is really personal, I am struggling with sharing it with you all now, only for the mere fact that some of you will think I am utterly insane.  With that said, I have a shred of confidence in the fact that I am suppose to share it with one of you readers, don’t know who, but someone is suppose to hear what gave me confident hope, better yet who.

Sunday morning, I was leading worship, it hadn’t even been 24 hrs of Ezzy’s hospitalization. Richard told me to not call off leading, to keep doing what we are suppose to be doing, because Ezzy was in Nana’s care and we couldn’t all camp out all day in her hospital room.  I fought him at first, but then as I digested what he had shared, I came to realize that he was right.  Leading worship is precious to me, its a weighted honor, an immense privilege that Christ would see me fit to do so.  In order for me to lead the way God has called me to, it involves complete reverence to his presence, I typically envision leading worship in his throne room, worshiping at his feet.

I was pushing my issues with Ezzy’s recent situation out of the way, trying to just see him, to soak in every word, making sure my head and heart believed them.  We were singing the song “How great is our God”.  During the chorus of the song I all of a sudden received a heavenly vision while we sang these words:

“How great is our God, Sing with me

How great is our God, All will see 

How great, How great

Is our God”

Ezzy was sitting on her hospital bed and I could see a band of angels circling around her.  They  weren’t armed and ready for a fight, instead they were swaying to the music and they were singing the words, shouted them for all to hear!  The battle was one, no forces of hell would touch her, he body was resting in safety.

In that moment, as the tears fell from my face, I was given an anointed peace that the world can’t and won’t take away.

We could easily fool ourselves that we don’t matter to others, that Ezzy’s battle, sometimes silent is one that we have been punished to fight, that is what the world wants us to believe.

Yet as we shared with you the unexpected sudden turn of events, we were immediately lifted up by so many of you.

7 nights is a really long time to be going through what we are all going through, yet Ezzy’s resilience is infectious.

 Each time I see her, thank you Face time, aside from the one call that had her in tears, thanks to the impending procedure to get her PICC line put in, she has been spunky, full of smiles and a mischievous plan to get under her daddy’s skin.  She is being tenderly cared for by amazing staff who know how to care for little ones fighting big scary battles.  Her days are filled with arts and crafts, her room is covered in her therapy.  There is no limitation to how much food she can eat, 24 hrs a day fresh fatty soft bacon can be sent her way. The hours of therapy, being connected to her dancing partner i.e. IV stand and being isolated from any other patients hasn’t taken away her spirit.

Thankfully two night ago, they cleared her to take a little stroll in the hospital garden.  I was informed it was a mini vacation for both daddy and Ezzy after 5 hospital days in the “hole”.

 A friendly neighborhood cat became their friend and they were rejuvenated after their adventure.

With each conversation I have had with Richard and Ezzy I have been affirmed that we are all being taken care of and well.  My sweet friend set up meals for me each night they are gone, knowing the chaos would result in last minute cold cereal dinners.  Just in time too, since my oven door decided to explode…don’t worry, no fires, but it was no good.  Another friend went on a run with me and has reminded me to hydrate as we prepare for the race, another friend watched the girls so I could leave for an hour and do something by myself.  We have played at the beach and playground and kept busy by my thoughtful friends.

I was even told that many of Ezzy’s classmates have made a prayer circle with a heart rock they found.  Everyday they go and put flowers and anything their little hearts and find, while they miss their friend and send the purest of prayers to Heaven.

 Many of you have been texting both richard and I making sure we are ok and don’t need anything…thank you, really, we are having the blinders pulled daily and being shown that so many of you care, that the battle Ezzy is fighting isn’t silent.

It is with some sadness that I have to wake tomorrow morning and run the 1/2 marathon without Richard.  If you were to ask him, he is okay with this arrangement.  We have been training for almost 2 months, raising awareness and funds for Ezzy to receive a therapy dog.  But I was really looking forward to doing this as a unit, doing this for our daughter together.  Yet, God already has taken care of this, I have friends running for Team Ezzy tomorrow, I will not be alone.  A friend even created decals for my shirt and pants.

 (we will be selling them by donation, to raise funds for Team Ezzy)

So as you wake tomorrow and see, cross your fingers, as drizzle falling from the sky (I did NOT train for this crazy heat wave we are having) say a prayer for me.  Pray that I am safe, I don’t roll my ankles and that as I pound out each stride on the pavement I am reminded that God knows, He sees, He answers our hearts cries.  Pray that Ezzy keeps fighting, that her strength never wanes, that her healing will be a proof that God’s hand is over her precious little life.  Rest assured that this little girl who is walking a difficult road isn’t walking alone, thanks to her angel band around her!

When we woke up this morning we had braced ourself for our double booked day and expected the little wrench in our plans to not be a big deal. I went off to see Kelly and freshen up my shaggy mullet and didn’t really dwell on Ezzy’s unexpected doctor appointment her CF doc scheduled for her.  He told us that he really needed her to be listened to by her normal doc and asked if we could get her in.  Not the most convenient time, it was 15 minutes before both girls had to be at ballet rehearsal for their spring gala in a week.

Ezzy was bouncing all over the doctor’s office.  Nervous energy probably from the fact her Saturday plans were suddenly changed as she saw her sister going off to ballet and her being dropped at the doctors.  After going over the sickness she has been struggling with for the last 8 weeks the doc heard her let out a “small” cough.  The doctor’s face changed and I informed her that was nothing compared to what I started hearing a day ago.  Even after starting the heavy duty drug our island had to special order, Ezzy was getting worse fast.

After a throat culture we were sent on our way and told to expect a call shortly…

The call came, I was home, getting the girls out of ballet clothes and attempting to ready ourselves for the next item on the to do list.  We haven’t been living in denial about Ezzy’s health.  Being told to keep “living” was what we were attempting to do each day.  So we planned to attack today as we have done the last 8 weeks.

In a conversation that lasted less the 6 minutes, we were told that Ezzy had to be admitted here at our hospital to start IV antibiotics until she could fly to Seattle Children’s on this upcoming monday/tuesday when a bed becomes available.

My mind felt like it got stuck on repeat, my words failed to form, my heart sank. When I gathered myself for what seemed like eternity, I asked the doctor, why?

Ezzy is run down, Ezzy does have a really bad cough, Ezzy has been sick for too long, but not like SICK. She still has had energy to pick on her brother, to baby Kyre after she had ear surgery last week.  She took on the roll as Kyre’s nurse and still mustering the strength to fight nap-time when I saw her come home with bags under her eyes after school each day.  Her spunk hasn’t waned even though her physical strength might have at times. 

When we thought of lung exasperations, we thought they would look differently.

So lung exasperations typically happen 1-2x a year for most CFers, they require a 10-14 day IV antibiotic to try and protect the lungs from scarring and damage that lead to a decrease in life span.

After getting the dreadful news, I called Richard, called my mom and started to busy myself with house work until they showed up.  As the tears fell from my cheek onto my shirt, I grieved the scary event that would soon be taking place in a 5 yr olds life as well as the realization that her much anticipated spring gala she has been practicing for would not be happening this coming Saturday.  I called out to my Abba Father, we had words, well, I had words for him.  I was mad, frustrated, just plain hurt.  I finished folding the clothes and stumbled on her little dress that God delivered a direct message to me…

Thankfully her CF doc called us and talked Richard and I off the ledge and broke it down.

1. we need to be thankful that she hasn’t needed a tune-up in her 5 yrs of life = proof of the care we give her

2. she should feel better quickly and this route usually kicks the bad bugs’ butt fast

3. we didn’t do anything wrong, her body just couldn’t fight it and with each cold she was around, more bugs buried in her lungs

4. we are catching this hopefully in time before permanent damage is taking place

After expressing that we were having to drop alot of happiness off her to do list this week, our doc encouraged us to take her to the carnival in town and check in an hour or two later then we were originally told.

She had a blast!  She got all the cotton candy she wanted, she nibbled her Carmel apple leaving mom to eat the other half

She suckered her brother into doing a “baby” ride with her…

just to ditch him when one of the “cute” boys from her class showed up and smiled.  We did exactly as her CF doc told us to do, we gave her some memories to hold onto that will hopefully carry her through these next two weeks.

I listened to her ask to speak to her siblings on the phone tonight, each conversation was different.  Cayden left in tears, Kyre in giggles, me in awe of her strength.  Her request was to spend the first night in the hospital with Nana.  Leaving mom and dad a night to be together before we are separated for awhile.  

The hospital staff here have NO C.L.U.E. what to do with her and her enzymes, her contact precautions, her disease.  We want to be at children’s where they understand and know what to do with CF.  But we have to trust that God has every detail worked out.  He made sure a friend is working at the hospital tomorrow unexpectedly, yay Kalli! 

We know that when a room opens up for her, it will be because God has worked his details out with the right people and the right time is in place.

Please pray for our family, we really, really suck at being separated.  We have a long hard week ahead with commitments and having Ezzy hospitalized is hard. Pray she gets a room at children s ASAP, the sooner she sees her specialists the better, KGH is totally out of her scope of care  We are scared, nervous and heart broken because she is entering a hard situation with no understanding of what it is going to cost.

I was driving home tonight from an art class I scheduled weeks ago and was talking with God, I felt guilt about going, even though Richard and mom assured me to go because only one person needed to be with Ezzy.  We were blessed by a friend who came and watched our kids so that Richard and Nana could do the change off.  He is a Saint, the pic proves it!!

 

I was drawn to these words to a song as I sought God in the stillness, trying to hear him speak to my aching heart:

Your love oh Lord ,Reaches to the Heavens

Your faithfulness , Stretches to the Sky

Your righteousness, Is like the mighty mountains

Your justice flows, Like the ocean tide

I will lift my voice, To worship you my King

I will find my strength, In the shadow of your wings

Strength will be found Ezzy girl, rest in the shadow of his wings, lift your voice and worship our King who has made you for this moment.

“My heart has heard you say, Come and talk with me,

And my heart responds, Lord, I am coming”

                                           Psalm 27:8

Have you ever wondered if God really, like really knows you?  Does he see what you are dealing with, your breaking points, your needs, your desires?  If he really knew you,then you wouldn’t be struggling right, you wouldn’t experience loss, pain or see a society plagued with darkness…

I have gleamed the internet reading about the state of affairs our world is dealing with: Baltimore riots, ISIS Boko Haram, Pastor Saeed, religious freedoms business owners are fighting for, same sex marriage, Bruce Jenner, Nepal, Hilary Clinton and the list goes on.  Where is God?

There was a time in my life that I wondered if God really knew my heart, knew my needs and better yet, cared.

It took me having to bury myself in the deepest darkest parts of my soul to realize that I was and am seen, called by name, by the one who wants to care for me.  I literally had to be stripped of all the things I allowed myself to fill up on and realize that I didn’t really have a healthy concept of God.  I would talk to him from time to time, but more of an acquaintance then a friend or an Abba Father.  My one-sided conversations consisted around my needs and wants.  I wasn’t looking for any dialogue, I was basically giving God marching orders…yeah…

“My heart has HEARD you say, Come and talk with me – And my heart RESPONDS, Lord I am coming!”  I had a steep learning curve in this part of my life.  I barely had enough in me to call on God and admit that I had needs, why on earth would I stick around to hear his answers.  Trust, broken, was the norm for me.  I held God at arms length, but most of the time a football field away.  Things never turned out the way I wanted it, it was like he took my suggestions and did the complete opposite or so I thought.

Looking back, God did send me answers, send me people, delivered help on my doorstep, but I was so blinded back then and couldn’t see or admit that he was caring for me and my family.

“You have always been my helper…

even if my father and mother abandon me, 

the Lord will hold me close” 

                           – Psalm 27:9,10

I don’t know what it is, but Richard and I are really bad receivers.  Asking for help is more painful then getting wisdom teeth pulled, impacted ones too…I would know.  There were periods in our life since Ezzy’s diagnosis that we desperately needed help and we couldn’t ask for it.  Instead we holed up in our house, let little people close to us and we lived in the sorrow of CF.  Those were the moments when I definitely did not see God “helping”.  As time went on we learned a new normal, was it healthy? Probably not, but we made the most of what we had.  

Does that mean that good hearted people weren’t reaching out?  NO…the problem was that coming home with a fragile child made Richard and I follow all the guidelines to a T, which were really hard to follow, esp if you weren’t living the life day in and out.  I recall precious memories of people trying to show us they cared but we weren’t in a place to receive the help or worse thank them.

“Teach me how to live, O Lord,

Lead me along the right path”

                   – Psalm 27:11

One thing God is faithful about is that he will show us how to live.  But are we willing to submit to him, to his path?  So often the path he designs for us is one that calls for us to be a servant first of all, not a master.  To be humble, patient, kind, compassionate usually are required too.  The first priority it that we have to ASK him to teach us.  

This last year I have experience more direction from God then I have ever in my life.  What changed?  My time with him, my two sided conversations, my desire to live according to his ways is what changed.

As I have looked back in the last year I have seen many times God has been trying to teach our family a lesson on how to receive his help…

Whether its an envelope stuffed full of cash left in our mailbox.

A box sent to a little girl asked to fight a big battle

An entire classroom praying for God bubbles and sending little treats for the entire family

A youth group showing up on our door with toys for our kids

A random call, text, email informing me I have dinner coming on days I needed it the most

A message delivered by a complete stranger that was specific to my searching heart

A painting commissioned by a friend

The list can go on, but I just want to remind you all that you are not unseen, unknown by our Abba father.  My question to you is, are you going to him with your needs with a surrendered heart or instead with preconceived notions.  I can’t promise you that you will walk away with money, gifts, dinners, messages, etc.  Those were actually needs, things that were seen by God and responded to for our family.  Our family has struggled feeling alone, wondering if people really understand the daily battle we fight.  Lately, we finally have eyes to see that God is and has always been wanting to provide for those needs. He has placed our family on others hearts so they can be his hands and feet.

In just 3 days we have almost reached our goal to purchase a therapy puppy for Ezzy. http://www.gofundme.com/sw2va28?fb_action_ids=932678040086397&fb_action_types=og.shares&fb_ref=m_d_ty&fb_source=other_multiline&action_object_map=%5B825615397516551%5D&action_type_map=%5B%22og.shares%22%5D&action_ref_map=%5B%22m_d_ty%22%5D  I really struggled with going this route, asking people to donate to a cause.  But I was encouraged to trust that people care.  I just want to say thank you to those you donated, shared the link and also took the time to say a prayer that our little warrior would get a much desired therapy friend!

“Wait patiently for the Lord,

Be brave and courageous, 

Yes, wait patiently for the Lord”

                             -Psalm 27:14

God will answer you in the timing that is perfect, I will warn you, it rarely matches your timing.  But he does answer.  He will answer.  Are you willing to be patient, to wait on the Lord.  The verse says we have to be brave and courageous when we wait.  Then it says “yes, wait” affirming again, that we need to be patient.  

We are in a situation right now in our family that is requiring us to be brave and courageous, to wait patiently for the Lord to intervene and do his work.  There have been ups and downs in the process and yet thankfully since the blinders have been pulled we still see God at work.

You want to know the crazy thing?  In those headlines that have caught my attention, the ones that provoke anger, sorrow, empathy, confusion, pain, self righteousness, I still see God.  I still see hope in hopeless situations because God has the final say folks.

“To all who mourn, he will give a crown of beauty for ashes

a joyous blessing instead of mourning,

festive praise instead of despair.

In their righteousness, they will be like great oaks

that the Lord has planted for his glory”

                       – Isaiah 61:3

No problem is to too big or small for my God, who is YOUR God…isn’t that something, he is free to all who call on him.

What struggle are you holding tight to right now because you feel like you don’t matter?  What situation is eating up your soul?  What thing are you turning to, to numb this life?

I ask this, because I am at fault right now.  I have been holding on out of fear and I realize that when I do that I can’t see God’s handiwork being done.

When you decide to go to God, will you add our sweet Ezzy to the list.  We are now going on 7 weeks of Ezzy being sick (super gunky cough and now chest pain) she caught RSV.  We have tried 3 different antibiotics and steroids to no avail.  Now on to a drug our island doesn’t even carry because its primarily used for CFers when they get a bad aggressive bug in their lungs.  Our amazing CF doc called our home personally and discussed the options with us. The plan is to try this drug and hope it does the trick, but we also talked about the possibility of hospitalization if we don’t start seeing a change.  Yes if you live here you have prob seen us out with Ezzy, she thankfully isn’t running any fevers, but she is run down, on edge and is now complaining her chest hurts.  We were told to keep living life unless she goes down hill fast.

So as you face your challenges and doubts of whether you are known by God, know this…

I am having to swallow the words I wrote and “wait patiently for the Lord” and I will have to choose daily to be “brave and courageous” and most of all realize that my family “has been planted for his glory”

      -Amen  

7 yrs may seem like a long time for most of you, especially if I asked you to recall what you were doing…

Richard and I laugh and look at each other confused and somewhat sadden that we know exactly where we were 7 yrs ago, most because it seems surreal.

Its hard to pinpoint the moment that we identified ourselves as parents, honestly, we still would struggle saying 7 yrs ago.  When we share stories with friends or new parents,  we always joke that we are lucky Cayden can’t remember that far back.  Really, we are.  It was hard to have a baby away from family and even though we had amazing friends who embraced our new titles, none could relate with us. 

The disruption to our social life, our sleep routines or the sudden wake up call to real life was extremely challenging. We thought we were ready to take care of someone else since we took such good care of our needs.  After Cayden’s birth we realized that we were babies, raising a baby and it was scary.

As Cayden grew his first year, so did we.  We learned, developed new skills and reach important milestones with him.  The most memorable one was getting our little guy sleeping through the night. It took a dear friend telling us that our sleep routine was in need of a big change.  Apparently stashing bedding for which ever parent lost the rock paper scissors tournament each night was a red flag.  Many nights were spent holding his hand through the crib and crawling on hands and knees while holding our breath in hopes that we would escape his room before the other parent gave up and fell asleep without us.

Our hearts ache when we recall the expectations we had for him when he was just 19 months and we were trying to figure out how to live inbetween the hospital and Ronald McDonald’s house.  He was a champ and rarely threw a fit and rolled with the punches.  He just wanted to be around his mommy and daddy and forgave the moments when we expected him to act like a 5 yr old.  He would lean in and hold us when we would rock his sick new baby sister.  It was in his second year of life that he was in the beginning stages of learning how to be who is down to the core.

Cayden is a caretaker.  He is compassionate, many times giving more of himself then a child much older would be willing to give.  Most of all Cayden affirms to us time after time that God was placing alot of trust in the little man that would make his parents understand what unfailing love and grace would mean and also the little man who would be there to help his guide his sisters through life.

 Almost every morning of spring break was met with him in the kitchen making his sisters breakfast and begging me to please let him make me coffee while I relaxed on our slow mornings.  One day while sitting on the couch nursing his baby sister I looked over my shoulder to find this sweet picture.

One Saturday morning Cayden knew his worn out parents were exhausted and trying to prolong their time in their bed, so he walked in, grabbed his baby sister and said, you guys go back to bed I have her.

At a very recent doctor appointment that required all siblings to attend, it was revealed that Ezzy was going to have to have a throat culture, something that makes her break out in a sweat and tears roll down her face.  She immediately looked down after the doctors words were uttered and after seeing his sisters fear, Cayden said “wow, Ezzy, you CFers are the braviest people I know, I could never do what you guys do”.  Her head raised, she smiled at him, turned to me with the tears sitting on the edge of her eyelids and opened wide.

To be honest friends, his heart, his kindness is something that I don’t think all came from life lessons from his parents.  We are imperfect, broken people, who struggle just like you and unfortunately make mistakes along the way.  BUT I will tell you that dedicating his life to Christ as a baby, praying specifically for him in ways that God told us to pray for absolutely developed a maturity that doesn’t reflect his age.  He knows when his mom reaches her limits and will offer help when I least expect it, let alone from him.

His recent emergency surgery to remove pieces of his ear plugs left us with a little guy that was terrified, but hid his nervous energy with silence and a somberness that left the hospital staff in awe.  When most kids would have been lashing out at a stressful event (trust me, I heard 2 other kids loosing it in the pre/post op area) he was leaning into me and asked me to pray with him.  After a mother’s prayer, that most definitely goes to the front of the line was said, I had a little man tell me he was ok because he knew “God was going with him”.

I have learned many critical lessons from the little soul that entered the world on 3-23-2008.  Some are wrapped in guilt and remorse but for the most part come in packages bursting with Joy and as I watch him discover who he is.

Driving home one day from the gym I was listening to the Moody Bible station and the topic was directed at moms with littles.  The speaker was explaining how important it is to not get wrapped up in the difficult years of childhood because those are the years we are forming the future…to understand that by the time the teen years start, our influence of parents declines.  When I added up the years until he turned 14, I realized that I had only 7 more years left with him.  I almost hyper ventilated in the car.  Shortly after Cayden told me he really wanted to go with me in the early am and teach me all that he has learned on his swim team.  Richard was shocked I was willing to get up at 5:45 am and drive us to the pool, but I told him what I had recently learned and didn’t want to miss this opportunity to respond to his heart. It will be one of my favorite memories with him because I learned from him what a patient teacher his is after he helped me work on certain strokes and flip turns.

 

Cayden currently spends his waking and sleeping moments dreaming of living the life of an outdoorsman.  Our dear friend Ken exposed him to the world of duck hunts and Cayden has forgotten his life before being a duck commander.

 Ken told us that we needed to return the bbb gun we got Cayden and get a .22 for him instead, since he was going to be a duck hunter for the rest of his life.  I decided that we can wait for one more year before he gets a .22 or see if he can save up by selling the furs.  Joel showed him what fun it is to take a walk, aka a marathon in the woods and run trap lines in hopes that he will have trapped a mink and ermin.

 Our son loves this life so much that his birthday party this Saturday entails him and a few of his buddies running the trap line, shooting bbbs and skinning a land otter.  I literally had to get consent from all the parents’ who’s little guys would be exposed to Cayden’s idea of fun.  He has learned to respect the land and sea and I do not doubt that he will be an abundant provider for his family.

Cayden desires his friends to know who God is, so much so that he had me call our church office to get enough invites for his entire class.

 He wanted them all to know about our church’s largest outreach event.

We couldn’t be more proud of the little man that is growing up and succeeding in life even with parents that still say “sorry dude, we are learning with you” after a time out and listening to God correct us which results in us apologizing.

My little guy is reading at a 5th grader level and he is only in first grade! I just spoke to the student teacher who helps with the science part of the day and was informed that Cayden will repeat verbatim what is explained and then demonstrate his accurate understanding of the new concept.  I know that whatever Cayden sets his sights on in life that the determination, compassion and willingness to think of others before himself will be integral to his success.

William Cayden Harney, Happy Birthday my 7 yr old!!!  Thank you for drawing us closer to our Abba father as we learn to lead you to him and also let you grow and dream in this big world!

It’s freaking valentines day tomorrow. I am beginning to dread this holiday and not because I don’t have the best reasons to ooze love out of every pore of my body, but because of pressure and demand it creates to go long lengths to show affection on one day…

My other reason for not caring for this holiday is because of a certain movie that is hitting box offices. A movie the world has deemed the epitomy of love, all things romantic and something that should be shared with the population so they too can partake…

I to be honest ignored all of the blogs, commentary, and spiteful articles or posts on social media. One because I get aggravated that I have to watch people fight on something that I partake in because I just want a mental break. Also because I see good hearted people flip a switch in an uncharacteristic way. Many times we lash out because we haven’t really sat down and thought it through why we feel or believe a certain way. SO…I stayed out of it. Mostly because I knew my heart and my brain weren’t on the same team yet. Then I had the opportunity to read a beautiful letter and it compelled me to actual share it and ultimately share my opinion. See we Christians, we face alot of adversity, we are called prejudice, intolerant, biggots, prudes…you get my gist. So many times when we take a stand we lack the very grace and LOVE that we are called to emit when we interact with others. Yet Christ called us to not “conform to the world, but be transformed to the renewing of our minds”. I have been wondering how am I suppose to explain to the unchurched, unbelieving, new believers, or my fellow sisters in Christ why we need to grasp what LOVE is in CHRIST before we make comments about a heated topic today or choose to not share our hearts because we don’t want to be set apart from the norm.

Then as I was faced with living the daily struggles of living in two worlds as one my dear bible study member so beautifully put, I then heard God speak to the questions that have been filling up the necessary spaces to function and leaving me overwhelmed and spent.

“love is patient and kind”

boy oh boy, this has been a HARD one to swallow this week. We are in the swing of full on plates overloaded, parents and kids spread thin and to top it off sickness. I wear many hats throughout the day, but I will admit being a nurse is the hardest one.

After rushing one morning to get valentines done in time for Ezzy’s preschool class, I was overwhelmed by the care that was being provided. You see, we were so busy we couldn’t even get to walmart in a timely fashion for vday cards, so daddy ran out early in the morning. I hadn’t expected the other kids to help, this was mommy and daddy’s fault. Yet there we were in a five foot radius with a naturally built assembly line busting out valentines. Sweet ya’el took her role seriously at eating whatever scraps of paper she could find.

“love is not jealous or boastful or proud or rude”

We received news this morning that Ezzy’s strep test came back positive.

When we were told yesterday at the doctor that she probably had hand foot mouth or 5ths disease I was not happy. Honestly, I would take strep over those other lovely alaskan cruds. It was soon explained to her that she would not be able to attend her much anticipated Valentine party at school. She had come home earlier in the week ecstatic about her little mailbox she had built.

The tears came, she said “it’s not fair Cayden is going to have all the fun”

Without missing a beat, my little man responded. “Don’t worry Ezzy, I know where your class is, I will go down there and get your valentines for you”

He is turned her pain around and instead of building on her statement of him having fun, he deflected and made sure she knew that her feelings mattered.

“it does not demand its own way. It is not irritable, it keeps no record of being wronged”

This one gets me. I am at fault big time, I struggle with forgiveness…yup there I said it. If you wrong me, if you cut me to the core, an offense will take seed and I will water it, warm it with anger and tend to it to make sure it grows strong. Awful, I KNOW.

I was sharing with a friend that I had a come to Jesus moment with my mom and she put it out there plain as day, with no chance for rebuttal. She told me that every sin, every act, thought, desire that doesn’t glorify God, all the muck, Christ died for that. He died for me, so I had a chance to start over. She told me when I see a person that has hurt me to immediately visualize the words “forgiven” over their heads, to remember that I have been forgiven and must give what was freely given.

“it does not rejoice about the injustice but rejoices whenever the truth wins out”

I sat in a meeting recently for one of my roles outside of the home. A discussion was taking place and it was one that involved emotions, ones that made me want to rise to the temperature in the room and make sure I was heard. Yet I sat quietly, I prayed because I heard him clearly say, “what are you doing? start praying!” So when it came time for me to either involve my tongue or choose to let something go. I let it go. Because we have to believe that saying “the truth always comes out” is true. You know what happened? I left with a promotion and am still in awe as I am adjusting to what this means for the next year.

“love never gives up, never loses faith, is always hopeful, and endures through every circumstance”

I was telling a friend I didn’t know why I was getting so riled up about the 50 shades of grey smut. I didn’t know why I was all of a sudden passionate about something that calls me to share my opinion openly and in settings where it is not always going to be received. She turned to me and said we all have our thing, the thing that drives us, the thing that God knew we could handle and use for him if we let him.

It was in that moment that I realized, YES, it is true, my thing is protecting what God gave us as a gift

I will tell you, that if I was the woman being accused of sin and surrounded by self righteous people ready to stone me, I would be not without fault in this area.

I loved how a friend recently said, “satan is a sneaky snake”. You might roll your eyes, but his plans and demise for a marriage worked. Hello Adam and Eve.

What lies are you believing right now? What temptations are you making compromises for? What is standing in the way of you understanding what LOVE is, God giving, life changing, perfect love?

I have to believe that ever since Richard and I took steps to safeguard our marriage, that is when the sneaky snake quit findings cracks in our foundation. He was unable to feed us lies that left us worse then we were before we heard them. Tears, threats of divorce, past choices, baggage we brought into our marriage were fuel to the fire. But through God’s grace we have found victory in areas we were convinced at one point would never bear beautiful fruit. You ever want to know what steps we took, ask me, Ill gladly share them with you.

All I know is that thousands of women and men are going to be flocking to something that degrades what a relationship is suppose to be. I also know how we can convince ourselves that it won’t impact us because we like the story line. Honey, if you have to read around the smut or buy/make a book cover to read a story line, just don’t bother.

How we do marriage impacts society, it impacts the generations rising up, it impacts the circles we are in. How we talk about out relationships, intimacy, and love carries so much weight.

Thankfully as I get older I realize now that there are more then 50 shades of love. I am learning it in the moments I see my children love unselfishly, in the moments we bite our tongues and show love and respect, when we smile and talk to the person who cut us deep, when we choose to stay committed to our spouse in EVERY aspect: heart, soul, mind, and body that is when we get a glimpse of God’s heart and how much he loves us.

“let love be your highest goal!” 1 Corinthians 14:1

if you are curious what the numerous shades of LOVE are, grab the bible, start digging. Check out 1 Corinthians 13:4-7. Need more passages, let me know!

Anyone else struggling with the fact that CHRISTmas seemed like it was a holiday that couldn’t get here soon enough? Yeah, we felt that way until we were up late yet another CHRISTmas eve, wrapping presents until almost midnight while watching the Holiday. We always laugh and say, “didn’t we just watch this?!?” With December brings the hustle and bustle, Bing Crosby in the background, strangers greeting you with a smile and a Merry CHRISTmas (no happy holidays here, thanks to living in a strong Republican state) and small town events that keep you at times busier then you and your family need. I LOVE, LOVE, LOVE CHRISTmas, I mean really love it, so much so that my new husband banned CHRISTmas music until after thanksgiving when we first got married and quickly found out what all that pent up energy could do while waiting for the friday after turkey day…Santa puked in our house that year. Each year my love of the season began to break down the cold heart that was two sizes to small as he joined in the festivities. I couldn’t wait to bust out White Christmas, my candy cane advent calendar, or the treasured ornament we had began to buy for Cayden each year to one day send to him when he no longer came home for CHRISTmas. Then December 2009 took place…

I just overheard Richard tell Ezzy, “hey Ezzy…did you know what your mommy was doing at this time 5 years ago?!?” “She was getting ready to have you…”

Breathe in and out Sarah, In and out…

I have done a fantastic job of holding this season at an appropriate length if I do say so myself. I fought planning her birthday party, like I do every single freaking year, it’s a defense mechanisim, but I didn’t let a dark cloud follow me as the giant ticking clock reminded me that its one less year of her life. I would grieve here and there, then breathe in and out, and face the world. The world that has changed since my closest girlfriends all moved away this year. I never had to explain to them why December was hard, they understood, they hugged me, helped me refocus and sometimes gave me my much needed space.

Her dad either perceptive to my trauma that clings to me with a deathly grip was eating up my soul or the fact that I was being pulled every direction with my ministry role and policitan role, filled in the gaps and planned the most perfect FROZEN themed party for our two little holiday babies. Kyre and Ezzy had so much fun with the jammed back party he planned and walked away feeling like two little princesses.

Trying to relinquish the bitterness that wells up in my soul and tries to seep in the crevices that have been dry and began to heal has been something that I have been in conversation with God. The tug and pull that my spirit would feel as I have a memory that sends a twinge in my heart would send me running to him.

When the moments that would normally send me in a whining tyrant to my Abba Father came, I would literally just say one or two words directed at him and then felt my control begin to fade and a longing of being wrapped up in his loving arms take over. You see me and God, we are tight, NO joke. I don’t know if it is because of the life changing bible study group I have been apart of this year, the intentional time I spend in his word daily, the healing he is doing in my life, or my spirit’s hunger to have a heart that resembles his, whatever it is, I have found that the darkness and loneliness are just mere glimpses before I am rescued.

As you all know we entered this school year, holding our breaths, anxiously wondering what this fall and winter would bring to our family. We knew the day was coming, had lived in denial, but also prepared for the worst. How could we not? The support group we are in told us to be prepared for lengthy hospitalizations, nasty bugs that would make her lungs decline, teachers or staff that wouldn’t care for her in the right way, or worse a VERY sick child that would have to be pulled from school because her health would be so detrimental.

Each time I felt the well getting ready to spill over I sensed God tenderly speaking to me reminding me that HE is holding her tight.

1. no length hospitalization
2. no nasty bugs (she actually finally got rid of one she has had in her lungs since she was 1)
3. no indifferent teachers or staff
4. no withdrawl from school due to medical limitations

We have been blessed with one of the most amazing, attentive, caring teacher and aide. They love my Ezzy. They advocate for her and go a step beyond what I could ever had expected as they joined Team Ezzy. It seemed fitting to have her draw them “Team Ezzy” lungs for their CHRISTmas gifts.

Ezzy’s one gripe since CHRISTmas break is that she doesn’t get to go to school. She misses the independence, the life she is building, the relationships she is developing, and the moments she isn’t living in an environment that reminds her she is different. Ezzy received Student of the Month at her school for the month of November. I was informed that she received this honor because she is one of the most well liked students in her class, she is always offering to help and be a team player, and that she is such a joy to be around. Her teacher told me that all the children gravitate towards her, everyone wants to sit with her, play at her station, or have her attention. Yet she divides herself, being a friend to all.

That’s it my girl, shine that light, shine it bright.

In the quiet, in the stillness, I know God is there, waiting to answer my heart’s searching.

Ezzy is thriving in her new life. I talked with a mom from her class who told me she kept her child out of school almost the entire first month of school when they received the handout about a child with CF being in her daughter’s class, because her daughter was sick. The mom didn’t know me or Ezzy at the time. I have been stopped, emailed, called, etc. by people wondering how Ezzy is holding up at school. I can almost sense them brace and get ready to receive news that will require an empathetic response. Their surprise and relief is welcomed by my own heart as I digest the words, “She is doing amazing, thank God”. I was blessed to watch her dance in her ballet class, she is the smallest and youngest, yet I just read her review and her teacher said “is the sweetest girl, I enjoy having her in class”.

Watch out people, she is magnetic. I see it everyday. People at church will head straight for her, pat her head, try to get a word out of her, or just peek at her as she lives her life breaking the expectations her doctors have given. Children want to be her friend, strangers love her from afar and filled the tree with presents because they care for her and her story.

Sweet Ezrah May, 5 yrs old dreams of being a teacher one day, dancing as the sugar plum fairy in the Nutcracker and plans on going to college…away from us…yes, she reminds of us from time to time she isn’t living at home forever. Her determination is inspiring, if she wants to do, don’t stand in her way. Her heart is so big and she always sees your heart, not what is on the outside. In the past, her dreams caused the worst side of me to reign, but now I find myself sitting back, acknowledging and encouraging her dreams without seeing them shackeled with the chains of CF.

God is doing a work in me in many ways, but it all originates with a little tiny soul that came into the world on December 26 2009

Happy 5th Birthday Ezzy May