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

“mommy, I want to marry Thierry..”
“um, how come?”
“because he is a nice boy and has crinkly hair”
“hey richard come here”
“ezzy tell daddy what you just told me”
“daddy, I want to marry Thierry”
“I’ll tell you what Ezzy, if you can find a boy that loves God more then you, then you can marry him”

I’m sure that the expression on my face probably didn’t welcome Richard’s deep answer to his daughter’s fragile heart. That was not what I was expecting him to say to a little girl at an age that still thinks that Daddy is a perfect option for a future marriage. Maybe because the human side of me couldn’t handle to concept of my best friend, the other half of my soul, loving something, let alone someone more then me.

I filed that little conversation away in my heart, not knowing that those words would be something that I would experience coming to life just a few days later…

Mastitis, stupid, mastitis is a curse word in our home. I have battled it 4x in the past and was hoping that since we passed the newbornish age that I would be sailing through without finding myself sitting in a doctor office or worse yet another ER room, running a fever, wishing that the very things that give and have given life to my babies would be cut off of my body. Well, then 5 am came with me wincing as each suckle made my brain, body, and conscious battle each other over what really mattered. The fever came along with a hot red mass and soon my husband was sending me to bed as he cancelled his much anticipated trapping trip with a friend.

Guilt, pity, frustration, sorrow, anger…you name it, I experienced it as I laid in bed as the fever sent chills pulsating with each beat of my heart.

Banishment to the couch or my bed was what the king of the house ordained and I sighed with partial relief that my daily to do list wasn’t being ignored as he attempted to do all of my duties.

Yes, we do things differently. My standard according to him is impossible to reach and unrealistic for any human to obtain. Yet there he was feeding, clothing, packing lunches, shuttling kids to and from school and their activities. Meals, water, a hungry baby were brought to me and I was then relieved of any child rearing once a baby’s tummy was full.

He decided to take cayden to the store with him one evening to grab some of nature’s remedy for mastitis. I was informed that as they stood at the isle with the cabbage they laughed and searched for the biggest head of cabbage thanks to my mammories thinking they feed triplets. Even admist their trip full of laughing, he was modeling to our son how to care for sick wife.

Why did it bother me so much to allow my husband to care for me? Doesn’t it say in Ephesians 5 that a godly husband is to “love his wife as Christ loves the church”? I have read this passage countless times, then I watched my husband live it out. Christ loves the church, his bride, his people so much they he gave up his life for her. Richard didn’t give up his life in that moment as he slaved away over laundry, dishes, butts wiped, babies rocked to sleep in the early morning. But he attend to me in a way that made him think less of himself and more of someone else.

When his 3 days of being Mr. mom came to an end, we sat across from one another and discussed that we are happy with the roles that each of us have in our family. He told me respect has been given, I told him that I couldn’t do what he does each day, because believe it or not I missed being needed, beckoned, ran to when something happened. I watched Kyre soak up all his extra attention and knew that when he went back to work it was going to be hard on me, her, and Ya’el. The proof was hearing Kyre ask daddy why he had to go back to work the next morning.

We all in a way loved to be tenderly cared for in selfless love. He didn’t gripe when Ya’el woke yet again when her tummy needed food, when Kyre’s dire state required his action or when he crossed off yet another task in the daily needs a family of 6 have.

My Ephesians 5 man is currently in Seattle with Ezzy, they just completed her sleep study and we have be warned surgery most likely is in her future. But I am thankful to know that whatever health issues that get thrown our way that I, my children, or my husband don’t have to go through it alone. He is the head of our household, who he looks to to lead him impacts how he leads us. I witnessed my little guy see that his sister was embarrassed and immediately made her laugh about the wires stuck to her head. By the time they stopped talking she wasn’t covering herself up in shame. Yes, he IS learning from his daddy.

I get it now, I get why he must love someone more then me.

Thankful that my girls are having a standard set higher then most have in a broken world, because he examples what it means to have selfless love. He strives to answer their adoring female hearts not in fairy tales, but instead in Truth that can only come from his Heavenly Father.

Thankful my little man is looking to his daddy to teach him how to care for his family. I recently received a message on how my little guy was doing. I know that as his dad spends every night doing devotions with him, just the two of them, that my hubby is making sure that Cayden learns how to love his bride one day, but first points him to who he should love more then anything.

Hard to believe that 14 years ago we started out, unsaved, wide eyed with hearts full of youthful arrogance.

Proof that God can take you no matter how/where you are in your life and say “My grace is all you need. My power works best in weakness”- 2 Corinthians 12:9

“I am at a loss with her, she is M-O-O-D-Y all the time, I don’t know how to handle it”

“you know what I started to do with my little one?” “I started telling them who they are in Christ”

“huh…”

“I didn’t tell them or identify their negative behavior as part of who they are, I only told them who they are in Christ’s eyes and something changed”

…This my friends is why having soul friends is SO critical when raising your children.

I love Kyrene more then I can adequately put into words. I have heard the gentle small voice telling me “she PRECIOUS, she is a GIFT, she is just what we NEEDED.

SO after a recent trip…who am I kidding, we just got in on the last flight last night, I am digesting the positive reinforcement I was kindly given by my kindred spirit.

Kyrene Grace is 3 yrs old today. I don’t know where time has gone. I have been looking out over the dark purple mountains that are being engulfed by the teal sky thanks to the encompassing cold brisk air and day dreaming of a conversation with my kindred spirit 3 yrs ago on a day similar to today. We talked, she heard my heart as I anxiously awaited the birth of our surprise baby. My friend who had been waiting for the blessing of another child rejoiced and squealed when I told her the shock of the double pink lines. She reminded me that God loved me and trusted me so much to bless me with another little soul, even if I didn’t ask God for this GIFT.

Kyrene is different then the rest of us. She is unpredictable, a trait that Ezzy, Cayden, Ya’el and I do not posses. You never know where you stand with her. One day she can wrap her arms so tight around your neck that you know her heart can’t contain the love she has for you. Other days she can sit across the table, eyes and arms crossed and have a stare that makes you shift in your seat uncomfortably, just ask Kalli. Richard and her go toe to toe on a regular basis. All those struggles I have had with her big sister and being asked “how does it feel to look in the mirror?” now give me the chance to ask Richard the same thing.

Aside from the strength God has placed within her tiny little body, I see a girl unafraid, unswayed and better yet courageous to do things against the norm. Kyre doesn’t do things half way, she goes all in, no holding back in EVERYTHING that she does.

I had a church member recently tell me that felt like they were given a golden star because Kyre was willing to sit and color with them and talk. She realized that Kyre needed to develop a relationship with her on her own terms and so she has patiently waited for Kyre to let the walls down this last year. It was the highlight of her week she told me.

Kyre has been adjusting in her own way to not being the baby. It hurts, how do I know?!? Because she tells me in little ways. Ways that make my heart wallow in guilt if I am not careful.

But how could I blame her?

She was the first baby to down right refuse solids, only wanting to get her nourishment from her momma. We were ecstatic when she finally took some solids on her first bday! She would stiff arm her daddy when he came near to her, fearing that he was going to take her from the place she desired above all else, momma’s arms.

I have watched her grow in independence. Become a little momma and boss her siblings around. When she makes up her mind on how things should be she instructs us all, making sure we attend to her grand plan.

You can trust that if there is music on, she will run and find the dress that will spin the most and will dance like it is her last chance. She will get so lost in her creativity that I will stop what I am doing and actually believe the emotions she is pouring into each twirl, sway or dance move.

She recently led worship in our living room, speaking about “G- sus” and then asking us to stand and raise her hands while she sang. My heart was soaring at that moment to see that we are raising another Kingdom child.

I have been recalling the moment she was placed in our arms, the moment I realized that God knew our hearts where calling for another soul to entwine with, even if it wasn’t conscious.

Well since our trip to see my bestie, Richard and I have been doing the technique that my friend shared with us. You know what?!? It’s working. The fit or tantrum that she would normally dive head first in is broken before those intense emotions that she is feeling at the time call the shots. We literally see her eyes refocus as we tell her WHO SHE IS IN CHRIST while leaving out who the world wants her to be.

Don’t we all need to know who we are in Christ? Wouldn’t it change our motives, thoughts, interactions and dreams, if we were called exactly what are hearts long for?

I am grateful for the fact that God decided to sneak little miss Gracie Poo into our lives. She brought moments of laughter as we traveled with her and Ya’el this last week. She gave us the opportunity to start anew with no offenses in regards to our parenting choices and forgave us. I am challenged to love the way she loves. To cling to her convictions that press her to do things. To laugh and smile so freely that her dimples sink into her cheeks.

With a thankful heart I am entering another year of being her momma. Blessed with the chance to lead her to Christ and his unconditional love that will cover her as she learns who she is in Christ. The number 3 never looked so good! Happy birthday Kyre Grace!

It was fall 2004, Creative Writing 201 had forced two lives to converge, two lives that couldn’t be any different found a common thread that semester. I had fought the decision made by my degree program to retake another writing class, since I had full-filled my writing requirements from the accredited private school I had transferred from. Looking back I am thankful that I had take the class for many reasons…

The assignment was simple, write a story based on favorite memory. My very recent engagement made the top of the list and I began to pour my heart over the pages as glimpses of that night faded in and out of the steel box that would hold them until it was opened to be shared with friends, family, children, and grandchildren.

A trip to the Notre Dame football field to see the team play with her mom, brother and sisters was painted so well that I swear I could smell the crisp fall East Coast air and the hot brawts being served. I never watched football a day in my life, never had the desire to sit and watch a ball be thrown and grown men tackled to the ground. Yet here was a young woman who breathed the game, who would give anything to have remnants of the field pulsing through her veins.

We talked, only at the surface level. She had lived her whole life in the big city, I on a small island. Commonalities were sparse, so it seemed.

I quickly found myself burnt out on “friendships”. Was it the fact I had spent my whole life drawn to the other side, rarely allowing any females in my space? I had grown up with boys in my class, church, family circles, and learned how to have friendships with the opposite sex. Friendships with girls took work, came with emotional roller coasters, games, etc. If I had a fight with one of my “brothers” we said sorry and got over it. If I had a fight with one of my girlfriends, my attempt at saying sorry and moving, not hashing it out, was my downfall.

Our classes kept merging together, even though we had different majors, we still found ourselves in class after class. Soon the talk dug a little deeper. The invite to hang out was given countless times. My past record with picking city people to befriend was 0 for 2 and my fiancé was not ready to play nice with fast moving people again.

For whatever reason, whether it was the need to have connection outside of my husband or the fact that this girl was everywhere, with her bubbly laugh and inviting smile, I said yes and put on a brave face and stepped out of my comfort zone again.

After just one night of hanging out at her sister’s, her’s and the sister’s new fiance’s apartment, I soon learned that not all city people were “city” people.

Our friendship is one that took its time to form, that allowed the waters to be tested and when the walls were put down, souls were revealed and a bond was formed.

Every friday night became “family” night. We would switch it up and meet at restaurants, apartments, and our house. We were a rowdy bunch, loved to laugh, loved to breathe in life, loved to play games and even though our roots could stretch from Alaska all the way to Michigan, we were a family.

Soon my life’s chapters reached their ending and allowed new ones to be written. Richard and I went from being the engaged couple, to the married couple, to the pregnant couple…

There we were standing on different sides of the tracks. It would have been easy to jump and bail, the reasons were stacked against our friendship. Yet, we stood on other sides staring at one another, smiling, embracing each other’s differences.

She graciously planned my baby shower with all of our friends, most of whom weren’t even in a serious relationship. But that was her, the planner. We all looked to her every friday night to decide what our big plans were for the weekend.

When I found myself dealing with the changes of motherhood she came and brought me chinese food and held my little guy while I ate a hot meal.

When the sudden move to our hometown required a frantic pack to be completed in 2 wks, she came, stuffed boxes, held a baby, walked away with a box of frozen food as a reward, the chicken lasted forever for her ;)…when it came time to say good bye it was brief, quick, left little time for emotions to well up inside as we severed the tie that had become strong as I changed in many forms before her eyes.

It would have been easy to say good by and move on. Out of sight, out of mind right?!?

Nope

We found ways to maneuver around the distance, thanks to texting and then the realization that FB was kind of cool, we reached out.

I have been waking recently, with a deep heavy sadness. I am longing for the warm sunny days of sitting by the pool with her, sharing dinner at Pei Wei, or just sitting and watching the office. I think about how easy it was to be around her, to share my heart. Our differences never drove us away from each other, but instead closer. Republican vs. Democrat, christ-follower vs. undecided, working woman vs. homemaker, etc. She was the very first person to know about each pregnancy with the girls, she rejoiced each time after the diagnosis of Ezzy, telling me that I could do it, no matter the outcome.

The years have come and gone, the two young women who had the world at their finger tips are now living the good life. She is married to a wonderful man, a man that gets her. She is using that super smart brain of hers and doing what she does best, planning and telling people what to do. I am nursing yet another child, making a home and finding my way in the curve balls that have been thrown. Yet that bond, those differences reconfigured into a deep lasting friendship.

10 yrs later, I still call her one of my best friends. She is one of my longest friendships with females.

Isn’t this what we all long for in frienships? Don’t we want to sit across from someone and know that our hearts were heard, received and not discounted. Don’t we all want to know that as the seasons of life come in waves, crashing at times or gentle rolls that we have people who will weather whatever storms drive those waves?

If you have those people in your lives, can I encourage you to find ways to tell them? Don’t let them go through life thinking that the giving, the constant steadiness of their character isn’t valued

Happy birthday my dear friend, couldn’t think of a better way to honor you, then to share with the world your tender heart!