IF you let them, they will TEACH you

“Hey Ez, come here, we need to ask you something”
“So who do you want to go with you to Seattle? Mom or dad?”

“um, NANA!”

“Ezzy, Nana can’t take you, who do you want Mom or dad?”

“NANA!” (stern look on the face)

“ezzy, we understand you want nana, but if you had to choose between mom or dad, who would you pick?”

(sigh accompanied by a roll of the eyes) “mom” (turns and walks away from us)
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LESSON LEARNED:
If someone had to steal her heart, at-least it is the person who stole my heart 29 years ago

For those of you who don’t know, I HATE flying, really, honestly HATE flying. I overcome my debilitating fear and continually give myself a pep talk while quieting all the crazy insane scenarios of what could go wrong while in the air, just to step foot on a plane. Really, I am the prime candidate for Xanax when it comes to flying.

We showed up to the ferry terminal with an hour and a half to spare, Ezzy started to get anxious, her siblings and her were all wound up in the back, showing us that they even get stressed when our tight family is broken up for a few days. The tension in the air could be cut with knife, but then soon ended with the baby screaming and shoving her brother to the ground so she could see the approaching ferry, which ended in giggles from all of us. Thanks Kyre, we can always count on you! Daddy turned to Ezzy sensing my anxiety rising as I picked at my nails, “hey Ez, I need you to be a big girl for mommy, mommy gets really nervous flying, when she starts to get frustrated, tell her DONT FREAK OUT MOMMY, ITS GOING TO BE OK”. I turned and looked at her and without a beat she repeated his sentence with a smile on her face.

We got through security, boarded the back of the plane, which ended up being a HUGE blessing to the 4 year old with a digestive disease and a pregnant mommy. She climbed in her seat, pulled out her crayons and paper and quietly sat without a peep while people slowly filed on, and at times were told their oversized carryon needed to be checked thanks to the very full flight. She asked me to join her and soon we were sitting letting our minds wander. Yup, I had the honor of traveling with a PRO, who wasn’t phased by the packed plane full of anxious people trying to get to their destinations.
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LESSON LEARNED:
When you are anxious, sitting and coloring can be the best therapy

A month ago some friends were unexpectedly sent to Seattle with a sudden need of medical care. I had hoped we would get a chance to love on them, knowing how lonely and overwhelming being relocated for health issues can be. I also know how sometimes, during the stress you need space. I was pleasantly surprised when the offer to meet up was received.

Ezzy shut down all of a sudden when we got into their rental car. This was a total change in her steady routine of traveling to Seattle every few months. She has known the family for years, spent time in their raspberry garden, jumped on their trampoline, and waded through our alaskan waters finding sea stars with the girls many summer days. But it threw her off, probably because she saw her friend in a neck brace. As the mom and I caught up with each other, we let the girls quietly play on our IPADS in the back and warm up to each other.

Thankfully we didn’t have to ask for food, they knew we would be hungry and drove us to a restaurant that catered to every single desire of mine and Ezzy’s heart. I lost count of how many bread sticks I ate, Ezzy would have ate a pint of Alfredo sauce if we had let her and by the end of the meal, Ezzy and I had full hearts thanks to good food and good company! We were blessed to break bread with them again after a full day of shopping and running errands, our heads didn’t hit the pillow until 10 pm. We had spent the day completely ignoring the impending day of stacked appointments.
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LESSON LEARNED:
Any time food is involved in a gathering, it can break down walls, especially if Alfredo sauce is an option

We had a restless night of sleep, thanks to not having our normal sleeping companions but also thanks to the next room over in the hotel…who decides to carry on a LOUD conversation at 3 am?!? As frustrated as I was, I remembered the first time we had stayed at the hotel, we didn’t step into the room until midnight, we had a rambunctious 19 mon old dealing with his new surroundings and hours spent waiting in a waiting room while mommy and daddy talked to the surgeons planning out the surgery for his new baby sister. I quickly got over myself and accepted the fact I didn’t know that person’s story next to us. In an attempt to drown out the noise I turned on the room’s air vent and ended up with a 4 yr old suffering from a 30 min coughing session thanks to the irritants hiding in those vents. 6:30 am came before we knew it, and I heard a little voice asking me “mommy are you awake?”

After seeing our GI doc, with a new prescription in hand to hopefully address the daily tummy pain she deals with, we headed to our next appt. The pulmonary function tests are now part of our visits, in the past they were only done once a year. Now they will be done every time we come down, so that the docs can have a better idea of her lung function and can see indicators of disease when her numbers drop thanks to sickness.

She talked the RT’s (respiratory therapists) ear off. She intently listened to each step he described to her. When mommy had to intervene to better explain his directions, he turned to me with a smile and said “wow, she responds really well to you, you know just what to say”. We walked away with glowing numbers and being told that “she is literally the most precious thing I have ever seen, really, the most precious thing”
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LESSON LEARNED:
when God places His hand upon someone, you can’t deny that there is something special about them, it still amazes me, the way she draws people to her without even trying

The CF team was pleased with her weight and height. Daddy and I have been overly concerned about the thinning out we have seen, knowing how crucial weight is for her lung function. All to aware the docs were recently concerned about her lack of growth, which many CFers suffer from. We were told she grew almost an inch in 3 months. The RD decided she would look into her glucose levels, since Ezzy has been insatiably hungry, I can’t seem to feed her enough, but she only gained one pound in 3 months. CF related diabetes is not a question of IF but WHEN, so she said she would investigate, since her pancreas doesn’t work (thanks to CF) and the pancreas is what produces insulin.

The tears started to flow as she realized the impending throat culture was approaching. I made the mistake of being honest with her and for the last 24 hrs was asked almost every hour if she was going to have to have the stick down her throat. The time came and she melted into tears, the same tears she shed each time we saw a new person that day, because she thought the throat culture was going to happen. The RN got it done faster then I had ever seen and without missing a beat she wiped her tears and said “thank you”. She knows why we do them, she knows we are looking for bugs in her lungs, she knows they are trying to help her.
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LESSON LEARNED:
She is our hero…we see the make-up of who she is was carefully knitting together in my womb, that we know she was fearfully and wonderfully made

After our 5 hours of appts ended, we went to find our friends who were being seen by their own team of specialist. Ezzy did not want to leave until she saw her friend was ok. We waiting in the recovery room with her mom until her friend woke up. As the anthesia wore off, Ezzy soon saw her friend was ok and climbed into her bed with her. They shared purple popsicles that they requested in unison when asked which color and I watched Ezzy tell her friend to be brave as the IV was removed from her friend’s hand.
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LESSON LEARNED:
having a friend to go through tough days makes any scary thing bearable

I shared my frustration with my friend as the girls were scarfing down their Panda Express after spending their entire day at the hospital. I told her how Ezzy was a mess each time a new person came into the room, anticipating the scary BIG white stick that would soon scrape her throat. I explained that no countless explanations could calm Ezzy’s fears that dictated her thoughts for the last 24 hours. My friend gently and lovingly said, “Sarah, do you realize they are just babies, really, they are only four years old, they are still babies”…”they are being asked to handle a lot right now for their age”…”don’t ask her to handle more then she can”

Yeah, the lump in my throat soon became so large that it took an act of God to swallow it down…when I found the words I humbly said “yeah, you are right, thank you”
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LESSON LEARNED:
When a friend speaks in TRUTH & LOVE, thank them

After just 4 hours of sleep we waited and waited for our scheduled taxi to get us…apparently a scheduled appt doesn’t mean much. It was during the waiting Ezzy decided to share with me her theological insight at 4:45 am.
“mom, do you know God loves us?”
“yes baby, He does”
“mom, He created this whole world for just us! He really loves us!”

Our taxi finally appeared after we both were nestled up sitting in the hotel lobby fighting off the sandman. I held back my choice words I had selected during the 45 mins I could have been sleeping, had I known my appt wasn’t going to be honored. Ezzy told the driver I was going to have a baby, he hesitated, holding back congratulations until I told him that the statement was in fact truth. We talked about what brought us to Seattle, how we have gotten to know the city like a second home. I found myself telling the driver that I knew God created Ezzy with the right stuff to handle the road she is on. The driver shared with me his views on the world, the sad direction is was going. Upon arrival to the airport we were instructed to safely get to the curb and not touch our bags. The gentleness from the drivers eyes was apparent as he grabbed each bag and brought them to us, he told us he was “blessed to meet us” and smiled before shaking my hand.

Thanks to spring break taking place in all of WA, we arrived with what seemed the entire population of Seattle trying to leave on AK Air. My heart sunk, I soon realized the delay in pickup was going to hurt us badly. As we weaved through the college students who didn’t look old enough to drive and got knocked over by the “city” people who don’t seem to acknowledge other life forms, we found a long line to stand in. The few hours of sleep the night before caught up to the 4 yr old who needed something to drink as well as a bathroom. She sprawled on the dirty floor, no words could get her up, it was a hopeless situation. I soon got out of her she wanted to “just get home”. I grabbed her hand, attempted to suck in my growing belly as I leaned down and quietly prayed that God would get us home. After another lengthy line through security, with people picking up her doll or bag for her as she would march off without it, we found ourselves lightly jogging through the airport in hopes of getting to our plane in time. By the grace of God we showed up when the last boarding call was taking place.
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LESSON LEARNED:
If you allow your heart to start out the day thinking about your Creator, just like Ezzy did, then you find your heart leaning on him when things fall apart

The only reason we were on the worst flight home, was due to the fact daddy and cayden were running a race for Ezzy and we wanted to meet them at the finish line. In the past it has always been mommy and cayden rocking our “breathing for Ezzy” shirts, but dad decided after some “encouragement” from mommy to do it. I was sad we still didn’t make it to see them cross the finish line together, but atleast I had the chance of watching my husband who hasn’t been running, working out, or training, cross the finish line with a sub 9 min mile…yeah, you can dislike him with me…I had to train to get a sub minute mile! HE then shared with me that at one point he told himself to walk a short distance to catch a break. But then he realized “if I am going to tell her to face things, hard things, then I have no reason to stop when it gets hard for me”. He shared how he got kind of emotional as he crossed the finish line. I told him he finally got it, why I started running for her. Why I crossed the finish line in tears when I completed the 1/2 marathon.
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LESSON LEARNED:
when you walk in someone else’s shoes, your judgement, preconceived notions, and unfair expectations disappear

We are home, a complete family and I am so thankful Richard suggested I take her one last time. I needed to spend sometime with a friend I don’t get to see too often, I needed to see my daughter’s courage and heart. She blessed me with plenty of times to smile, she found ways to still smile when deep down her fears were controlling her thoughts, and through it all she yet again showed me how much I need her.
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