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.