Fix Our Gaze

I have wanted to write this blog for awhile. But life, you know? I know that most of the mommy friends I spoke to this last month, we all shared the same sentiment. Going back to the school routine and schedule takes so much stinking time to adjust to. Not only was I facing a new routine that was against our whole summer motto of “we will get to that eventually”, but I also was asked to preach, which meant that I would be giving up my fringe hours to prepare, listen, and deliver a word for my church family. To top it off, the back to school crud came pounding on our family’s door, which took more out of us then I anticipated it would. Now that I survived yesterday and did what the Lord asked me to do, I am now free to write this fun memory ❤️ 

When our friends asked if we wanted to join them on a camping trip, we immediately said yes. We were broken in on our Memorial Day camping trip and felt like we were bordering veterans after 5 days at Orton Ranch in July. But when the realization of what the YES would entail, my anxious, overly cautious soul found itself in knots.

 

I did a good job holding it together and not letting Richard or the kids pick up on the fact I had a little person jumping to and fro in my head screaming all the “what ifs…” or better yet “you willingly signed up your family to go through Clarence straight?!?” Or “what are you thinking?”

 

After pushing the little person in a dark closet in my mind, I did my best to move on.

 

So we began to pack our things. Laughing as the pile got bigger and bigger. I even sent a text to my friend saying, “um, I promise, I did leave the kitchen sink behind”.

 

As departure day got closer, the weather forecast was not in our favor. We couldn’t leave a day earlier due to Richard’s work schedule. Both families hoped and prayed the weather would lighten so we could get there safely. The night before I yet again texted our friends and asked “how hard core are you guys?”. My true colors were showing, but I was getting nervous people, there were white caps all over the seas 😳.

 

We woke to the sound of rain beating on our roof and windows. You could hear and feel the gusts of wind as they came with no break. The men loaded the boat up that would carry 12 people to their much anticipated destination. When Richard walked back into the house, not a single thing on him was dry. He even got soaked in the monsoon while wearing heavy duty rain gear.

 

I sent a text to my mom and our bonus parents, asking for prayer. We loaded up and placed our faith in God, but also in the fact that our boat captain, my friend’s husband is an experienced boat captain and diver, Clarence straight was not foreign territory to him, he had been in seas, much bigger then 5 ft, which is what we were going to face.

 

The boat ride…well…

 

Puke ✔️

Sea sickness meds ✔️

5ft seas ✔️

Stressed out sarah ✔️

 

The rational side of me was fighting with all its’ might to chill out. But let me tell you, it had a mighty opponent to face. At one point the boat captain mentioned my white knuckles that hadn’t let go of the metal railing since the first roll was hit. It was clear that I was not enjoying the lovely southeast fall storm.

 

Then as I started to breathe, as I fought to keep my stomach from joining the other stomach that was now in the A&P fried chicken container, I began to do what I always do when I am stressed. I started to sing.

 

“You walk on waves, you run with clouds, you paint the sky for me to see, your majesty, your majesty is why I sing”🎶

 

It’s funny how I could have solved the problem 45 mins earlier if I had had my heart in the right posture to acknowledge that the maker of the waves was in control and that he loves me more then the waves crashing, I could have handle those seas so much better.

 

We arrived to a quiet little cove and saw our cabin that would be our home for the next few days.  Kids had boots on in no time to board the skiff that would get us to dry steady land, but it was the mommas that made sure we were on the first trip over. Little babies that needed to be fed had put their requests in.

 

We were completely blown away with the cabin. Full kitchen with real counter tops and running water, a couch by the wood stove and big windows to sit and look at the beauty our Heavenly Father created.

 

The kids were let loose to explore their new surroundings and we began to unpack our gear and set thing up while the men ferried it to us from the big boat.

Our first night we dined on halibut and did our best to dry out after getting soaked from earlier in the day. The rain didn’t stop the kids from exploring and there were wet clothes, muddy boots and countless layers that would need to hang dry all night.

 

The kids were all piled in one room together which meant that bedtime was a figurative time frame and it came with lots of laughs, giggles, songs and flashlights going every direction.  

 

Thankful our sweet little babies slept through the nighttime shenanigans and let the adults stay up and share stories, views on the current world issues and the heart/mission of the church.

 

I have found as social media has become a bigger giant then I think people realized it would in the last 10 yrs, forming and building relationships can be really hard. People can save the “best” of them to only show the world and edit and delete the heck out of anything. True, transparent, open dialogue is hard to find. Add being a parent to more the one child makes it even harder with the need to keep countless appointments in check. Then add a kid with a fatal disease to the mix and it is SO hard.

 

We had prayed and prayed as a family, that if the lord intended to give us rest from the hustle and bustle he would protect Ezzy and the other kids from colds and we would be able to go with everyone being healthy.

 

The morning light came way too soon for parents that stayed up like they were young 20 somethings and didn’t have a care in the world. Thankfully our friends had coffee perking as soon as little feet hitting the ground was heard. After a big breakfast we ventured out on a hike with the kids.

 

Did we hope to see deer?

 

Um, yes.  

 

Did we expect 8 kids under 9 to be quiet in the woods?

 

Um, no.

 

But I will tell you, it was fun listening to the conversations going on. To listen to the questions that would pop into inquisitive minds. To hear how the kids would answer each other’s questions. Relationships were forming. Even with the purest little souls.

 

We stumbled on a baby fawn and got exited and hoped that a daddy might be around later.

 

We didn’t see anything, most likely because we had scared anything with working innate self preservation away.  

 

But after 4 miles we had worn out tired kids that had brought the level of crazy to a manageable level.

 

I had a chance to sit and talk with my friend as the kids played in the break from the rain while the hubbies set the skate. Honesty was delivered. On both ends. My love language: quality time, was met in abundance with her that afternoon. I never ever intend to come off intimating, yet I get labeled that a lot. But praise Jesus, he brought her to me, because as we walked through, talked through some of my giants, she gave me solid Kingdom principles, not easy to hear, but spoken in truth and love.

 

When the men had developed a plan to go hunting early in the morning we were given a brief gun lesson. Neither of us had loaded and shot a gun in a long time. If we were going to be left on our own with little kids that embraced the freedom of camping life and had shown a tendency to go farther then yelling distance we needed to be equipped.

 

The second night came quickly and was met with tired kids that had found their sleeping bags calling them sooner then the night before. We were blessed with another night of conversation and laughter and even more assurance that our friendship would not be brief.

 

The next morning while the men were out hunting, we fed hungry tired bellies and prayed that we would have fresh meat to eat in the evening. The kids enjoyed their pancakes that were made with the benefits of their labor from picking the afternoon before.  

 

Our quiet afternoon of card playing, being slaughtered at go fish came to an end when a bear cub was sighted and no momma bear to be seen. And you had better believe that of course kids were much farther then we had wanted. We managed to get them safely inside the cabin and felt comfortable enough to put away the gun.  

 

Nika, the most efficient guard dog refused to stay inside with us and sat out on the porch watching and guarding her family.

 

The kids went to bed in record time that night. We were all tired and feeling the effect of the long days of “relaxing”. Plus, feeding them marshmellows with a required promise of going to bed without resistance helped. We ended our last night staying up again, forcing an escort to beam a big light on us yet another night as the moms escaped to the outhouse, and went to bed with light hearts that had been heard.

 

We worked hard to pack up our gear and get the cabin put back together, it was our goal to leave it cleaner then what was left for us. We all found our roles easily and laughed at how we got the whole “commune” mentality. The kids enjoyed the low tide and explored all the way up until it was time to say good bye to our temporary home. (Even boo bear had to help haul gear 😉)

 

We weren’t ready to go back to the demands of life. Even though we were tired and wanted the comforts of our own homes, beds that didn’t squeak with each deep breath taken or the bugs that taunted poop covered hands to be swatted at on top of a head 💩🤢 or being eaten alive each time we stepped outside, we had all enjoyed this getaway.

 

Our souls need it, I didn’t have the forethought to know that this trip would be as meaningful to each of us, including Ezzy as much as it was.  

 

When we got home we asked each kid to tell us what was their favorite part of the trip was.

 

Cayden: the hunt with Adam and daddy

 

Ezzy: getting to sleep with everyone in the same room

 

Kyre: ALL of it

 

This trip was possible because of a dream a little man made. Because of a big goal that he dared to set and better yet accomplish. Each therapy session was done thanks to the generator. It even allowed for a mom to pump and get some relief. Because of Cayden’s heart,  Ezzy got to experience something so little, yet so huge in her life: a sleep over 3x.

 

After our recent trip to Seattle and the news of her lung function dropping, warranting the need to start a drug that when we first heard about it, her team said she wasn’t in need of. Her lung function has always been above normal, so much that when she started to do lung function tests, they didn’t have other 5 year olds to compare data with, because most kids that age can’t mentally and physically do them properly. But Ezzy hit them out of the park each time. This has allowed them to monitor her lung health more closely over the last 3 years.

 

So when a dip showed up along with a lung infection that wasn’t responding to antibiotics, our doctors came with the heavy news of her now being a prime candidate for the astronomically priced medicine. After years of being told she was above the norm, we had to hear from the doctor who has cared for her the last 7 years that she was finally in a normal range, which to be honest we don’t ever want her to be described as a normal CFer, we want her to not be the norm.

 

Armed with the information on the possible side effects of the medicine: tightness of the chest, cataracts, and liver enzyme elevation, we still left with peace.  

 

Peace, true peace, peace that rushes in when the weight of the world, its present troubles are piled high, when the peace of the Lord pours over you, you can’t help but breathe a sigh of relief.

 

The side effects, the high cost of meds ($300k a year), the decline in lung function, the realization that Ezzy will at times not get better despite the countless hours we dedicate to extra therapy sessions, time spent on high calorie meals, prayer, exhaustion from doing things on our own strength, the unending emotional battle a caregiver gives as they watch their loved family fight. All of those things don’t stand a chance against the very fact that Ezzy is and will always be God’s child, not mine. We have to actively choose to believe and trust he is always going before her.

 

There is going to come a time when I need to remind Ezzy in the midst of her tears about life being unfair of the time we all piled in a boat and watched ice age on repeat and tried to keep our food in our stomachs or watching Moana every therapy session


with everyone huddled around her and mommy’s iPad or cornering the gentle giant Adam and talking his ear off when he finally found a moment of quiet or the time when Autumn showed no mercy at go fish or the sweet baby Grayson who saved all his best smiles for her, every time she asked to hold him.

 

Thankful God is faithful to fix our eyes on the people he brings into our lives to help lessen the weight Cystic Fibrosis can bring to our family and their hearts to provide opportunities for us to make special memories with our warrior.

 

“That is why we never give up. Though our bodies are dying, our spirits are being renewed everyday. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever. So we don’t look at the troubles we can see now; rather; we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever” – 2 Corinthians 4:16-18

 

 

 

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