Cayden’s birthday is quickly approaching, really…its in less the 3 days. Isn’t funny how when big events like bdays, anniversaries, special events, and other memory making days always make you walk down memory lane? Well, that is where I have been the last few days.

I recently recalled a sweet memory before Cayden was born and it made me miss our church family dearly in AZ. We had started to attend church a few months after we found out about Cayden. I had walked away from God, for many reasons, too many to list here, but regardless of my detour in life, I soon found myself longing to be back in line with God. We had gotten settled in, even Richard, who had shuttered at the thought of giving up Sunday mornings to go and listen to something he didn’t believe in at the time. Thankfully, that all changed, and I found my husband one Sunday morning at the alter on bended knees no longer able to deny the TRUTH he had heard each Sunday were he was drug by his persistent wife. We were graciously loved and accepted and soon got to know quite a few people. As my due date was approaching, and my ability to walk without a significant waddle was no longer, I found myself inpatient. My mom and sister were making the trek to AZ for two weeks. The pressure was on to get Cayden OUT. When I had reached my limit one Sunday morning, I was surrounded by many other moms, aunts, sisters, and grandmas. I found myself in the center, with many hands laid over me praying that Cayden would be in my arms Easter morning.

Well the day before Easter I was at the hospital for another stress test, thanks to the fact Cayden didn’t get the memo he was suppose to come on his due date. I soon found out that the Braxton Hicks I thought I was having were in fact actual contractions, and I was in labor. 12 hours of pitocin (with no pain relievers) thanks to my body not progessing, some not so nice words said to my husband, and a worn out body, I caved for the epidural after hour 12. I didn’t just cave, I told my husband that if he didn’t get the paperwork now, he wouldn’t live to see his son. The biggest problem was that I had made him promise to not let me cave, I wanted to do it natural, to prove I was tough enough…with pleading eyes, and him saying the words I made him rehearse, he finally realized I wasn’t joking. I found myself Easter morning at 4:49 am with my little man briefly in my arms. We had a traumatic birth, leaving him rushed to the NICU and myself fading quickly. Fortunately my mom was there to stay with me so Richard could follow Cayden, even though he didn’t want to leave me.

Just last week Cayden told Richard and I that he wanted to go to college to be a Pastor. I stopped what I was doing in the kitchen and came out to look him in the eye, I wanted him to know I heard him. That kind of statement shouldn’t be ignored…I told him that he would need to go to Bible College, but that I thought it was a great idea! He responded by telling us that he wanted to be the pastor of a church here, a place that we had visited when one of our district guys came from CMA. This man had given a powerful testimony, one that has changed my outlook on trials that God allows us to go through. I didn’t realize that Cayden had been listening, until he described the church as “the place that the man spoke with a hurt throat”. He was so matter of fact about this decision.

Well I have been thinking a lot about this statement he made. At first to be honest I didn’t put too much thought behind it. As any mom can attest, a child’s dream career changes faster then the time it takes for them to learn a new career. It wasn’t until I told our pastor what he had said that I realized I needed to change my thinking. Our pastor told us that he now knew what he needed to pray for Cayden.

I have been really excited this week, every time I think about the road God is paving for my little man. It was last September we had asked Cayden if he wanted to go to a Christian School. Cayden is a creature of habit, much like his momma, and I knew we needed to let him digest the possibility of leaving his established friends and teachers and go somewhere new. When he realized that he could learn about God and learn all the other stuff in the same place, he never looked back! Thanks to giving hearts who believe in providing an education while building a foundation, we were able to send Cayden to the Christian School with help from a scholarship.

I have seen over the years countless prayers being answered for my little man of God. Before his first birthday I felt God nudging me to pray specifically for him. So I found myself fasting, asking God to tell me how to pray for him daily. It was when the fast was over that I knew clearly to pray for him to have a heart after David, one that would sing God’s praises in the good and bad times, and a heart after King Josiah, one that would desire to know God at a young age and follow his convictions and not back down.

So here I am looking at my little man who is almost 5 and honestly unable to fathom where the last 5 years have gone. He is a mighty man of God, who humbles myself and Richard on a regular basis. Who has scripture verses memorized and will use them when a situation calls for us to hear God’s truth.

His love for his sisters is unconditional…I am serious. I have been getting chewed out daily for disciplining Kyre. He will say, “mom, she is just a baby, she doesn’t know any better”.

Today at nap time, he grabbed Ezzy by the hand, got her a pull up and kissed her goodnight…and my 3 yr old and 1 yr old when down without a fight.

Our lives are greatly enriched by Cayden. He has forever changed my life, he unknowingly presented me with a decision 5 years ago to stop my selfish ways and to give more of myself then I knew was possible. To stop obsessing over the newest coach purse or how I would spend my days off sleeping in and eating out with friends every weekend.

So today I am going to try and slow down, to stop asking him to be or act older then he is. Lets face it, what mom doesn’t ask more from their 1st born, he has at times had to help me raise his sisters, so that I could get a cup of coffee in silence or better yet a shower.

These next two days I want to keep looking back over the last 5 years and see how God knew how much we needed him. That Richard and I needed a reason to get our butts in church, needed a reason to change our ways. That Ezzy needed a brother who makes himself the butt of jokes so that she will stop crying during therapies.

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That Kyre needed a brother to defend her and tell her everyday “stop growing up Kyre, I want you to be a baby forever”.

William Cayden Harney, I am so thankful that God gave you to us. My prayer as your momma is that I will allow God to speak to my heart and slow down and cherish each day you grow, but more importantly to prepare my heart for the work HE is calling you to do in your later years, and to be the mom HE has called me to be to ensure that you walk in HIS ways. LOVE you my almost 5 yr old

I have been thinking alot lately about our recent trip to AZ & CA. The memories are starting to fade, quickly getting replaced by the everyday life of being back home. I have laughed to myself, had a smile that even the sideways rain can’t diminish, but most of all am realizing how much our trip was a blessing for our quiet isolated souls.

When we realized that our trip to AZ was going to happen, my mom and Richard soon put the idea out on the table to make the long drive to Disneyland, yes for some of you that live in the real world a 6.5 hr drive is nothing, but for those of us here in ketchikan with only a 33 mile stretch of highway, 6.5 hrs sounds daunting!!!

At first I will admit I didn’t like the idea, for a few reasons, I was unsure of how much the kids would appreciate the trip, and also wasn’t sure if they were going to be big enough for the rides. When we researched the cost, I was put off. I couldn’t comprehend spending $500 to go to Disney for ONE day, then gas & hotel on top of that. Being a one income family, throwing that much money down after the money already being spent to get to AZ, I couldn’t stomach it. Richard soon came to me and told me where his heart was. He wanted so badly to go and take our little Princess there, the one who has a custom made Princess closet, packed wall to wall with Princess dresses. The little girl who insists on wearing her Princess heals to church, and stacks every piece of jewelry on top of the other and risks falling over from her “bling”. He told me that he wanted to go NOW, that he wants to give her everything he can and have no regrets. For some parents to have this mindset I would be worried about the attitude a child would have growing up with this parent, BUT for a little girl who has scars on her arms from the countless IVs she has had, and the child who spends hours upon hours of therapies, I can’t argue that she needs him. She needs her daddy who is the knight on the white horse that will do anything to save his princess.

We loaded up our babies at 11 pm, deciding that if we had to drive with 3 kids who were starting to hate the car after a week in AZ, it would be best to do at night. We started the trip off with a prayer of protection and thanksgiving to God and got on the road with more anticipation then the sleeping kids. It was a beautiful drive, we saw the stars in the desert sky, took turns driving, and had great theological debates with my mom.

Our 1st day in CA we went to Legoland. I had never heard of the place, but everyone we talked to said it was great for younger kids. We had gone to IHOP one day in AZ and found coupons there for buy one get one free!!!! So it was decided that since we were driving to Disney we should just go the extra hour and stop there as well. We had brought along a letter from our CF docs, mainly due to the CF mom group im a part of. Some moms had shared their experience of using the letter to allow them to get a guest service pass. This pass allows the person with a medical diagnosis and their attending family to by-pass the rides’ wait time & lines! The rides were all accustomed to our kids’ age group. We were able to walk up to the exit of each line and almost always get on a ride right away. I will admit I felt guilty and slightly silly using this guest pass in the beginning, BUT as the afternoon sun came out and temp rose, my little CFer started to decline quickly. She fatigued so fast, got super cranky, and was off. So we just continually had her hat on her, sunscreen every hour, salt packets ready, along with gatorade and water bottles handy. It was so much fun to see her experience something new, to watch her have this new found freedom. Her daily life here in ketchikan is so limited, even aside from CF, there aren’t alot of new experiences to have here. We literally walked our legs off, soaked up tons of VitD and spent 6 hours there, with very few meltdowns! We talked with other families who had the pass, explained Ezzy diagnosis, and had one mom tear up and tell me Ezzy would be in her prayers.

Our next day was one us adults could barely contain our excitement for! We decided that we would go and get a big breakfast at Dennys, which was such a good idea, we all needed to pack in the calories for another day of walking. We stuffed our faces and bellies!

We walked to the tram, hopped on and found ourselves at the main entrance in just a few minutes. We again brought our letter along, but this time were slightly hassled by the guest service rep. In all honesty, I can’t blame them. There was my husband trying to explain the disease and its effect in heat, with my vibrant, full of energy 3 yr old running circles around him. Once my husband found the right words to say we quickly found ourselves with a guest service pass.

We had the chance to ride EVERY single ride that the kids were tall enough. Which if you have ever been to Disney you know that this is impossible to do in one day. We saw the confused faces of people as we would walk up through the exit, and then be met by shocked faces from all those who were just seconds away from getting on as we would be ushered on a ride immediately. I couldn’t believe the genuine attitude of the staff, they would smile, never seemed annoyed when we would show up, didn’t give us a doubting look as they saw our family, and would engage with Ezzy and Cayden and get them hyped for each ride. My kids LOVED the Casey Jones train ride, Ezzy insisted on sitting in the cage box! The Buzzlightyear ride is still talked about in our home. Richard insisted on taking them on the haunted house ride…my mom strongly refused :)…I was weary, but Richard wouldn’t back down. The Pirates of the Carriabean was the one I couldn’t wait for, but quickly became the one I had so much remorse for going on. You see there is a point you go through steam, I was about ready to grab Ezzy and swim to shore…not kidding, you see we aren’t suppose to have her around steam, because its were a very bad bacteria lives, one that is deadly to CFers, its the very reason we can’t take her to our indoor swimming pool. I was about ready to cry and leave after the ride, but Richard reminded me that we were here, trying to give her a life outside of CF, and that we had to trust God for the protection we asked of him each day.

cayden had the chance to meet one of his favorite characters, I have watched TOY STORY more then most would ever want too! MY son being all boy decided that after this pic was taken he tried to knock Woody’s hat off his head..we quickly ushered him away before he was taken out by Woodys bodyguard

We ate the dolewhips that my friend Kelley told us had to be consumed. We almost stayed the whole day without a break, but when sun began to set we realized we needed to go back and put on some extra layers. We quickly ran back to the tram, got changed at the hotel and went right back. My mom and I had been telling the kids of the amazing parade they do every night. Richard had never experienced it before in all his years of going to Disneyworld. I decided that our kids needed something sweet while we waited, trying to keep our eyes open after a super long day. I went to grab 2 churros to share. I shared with the lady that we had traveled from AK with our 3 little ones and were having a BLAST, I watched her throw 3 churros in the cinnamon and sugar, wrap them up and tell me “you can’t have just 2 with 3 kids” she gave me a warm smile and a wink, and I don’t know why, but I found myself choked up. I felt the tears rise up and all I could say was “bless you”.

You see, I wasnt shocked by genuine kindness from a stranger, that wasn’t what caught me off guard. It was the fact that I watched God provide time after time for this trip. We had situations arise, seeing the difficulty and challenge staring us in the face, but then watched it all fade away as God stepped in and took over.

On days like today, where all I have done is wash, fold, and put away 9 loads of laundry, while staring out my window, dreading the 10k I have to run in sideways rain, I am being reminded that God took care of us. He allowed us to leave this island, go and experience things as a family, and have chances to wake up and not live CF every second of the day, like we do here.

One of the best parts of our CA trip was meeting a friend I have had for the last 2 years. We were introduced from a mutual friend, because we both have daughter with CF. She has been a blessing, sometimes a therapist, and I doubt she knows it. We will have lengthy emails back and forth, update each other with the girls were sick, but most of all she provided me an outlet, one that I could go to and say what was on my heart and know that I was understood. I had wanted to meet her, but was unsure how to orchestrate it. She kindly initiated the meeting and we sat and had coffee for few hours. I had the pleasure of meeting the mighty warrior she is raising and she got to see my lively Ezzy (at different times, since the girls can’t be around each other due to cross contamination of bacteria) We sat and talked and I never once felt like it was our first meeting. I could have sat with her for hours. In our conversation she had heard about Ezzy not being in a pool and quickly offered up hers! We gladly accepted and soon found ourselves swimming in a pool under the warm CA sun. Ezzy was scared at first, as she should be having not been in one, but soon mustered up some courage, and wanted to hang on the side of the pool by herself.

We had so many experiences, situations, and conversations that would have never happened if CF wasnt part of our life. We probably would have held off Disney until the kids were older, and Im so thankful we didn’t. We would have spent ALL day at Disney and still not have ridden every single ride, if it wasn’t for CF. I never would have met a courageous mom who has made her life to be an advocate for her child, the one who is has no shame in saying “I have cystic fibrosis”. So today as I am recalling the recent events in our lives, I am finding myself in some ways thankful for CF. It doesn’t make sense, but today I can truthfully and wholly say, thank you God for trusting our family with CF.

Ever since January 1st of this year, my family had been in countdown mode, primarily led by our efficient 4 year old. Every morning would start with him asking “mom,what is today…how many more days…what?!?, thats too much, its never going to come!” The countdown was for our family trip to AZ, disney land and lego land!

There were days that I felt the same, I had been dreaming of going “home”. I know it sounds silly to say that, I am reminded daily that here, ketchikan, is my home, but I swear a piece of me, fairly large piece was left in AZ.

Soon the month of February came and each day was flying by, I had been appointed as THE worship leader for our church and Richard began to really pray and prepare for his new discipleship program he is starting at our church. Before we knew it we found ourselves in single digits on the countdown. With 5 days left, I could no longer contain my ever thorough, list-making, OCD, anxious self. I started to find a little tranquility in making lists, going over it each lunch break with Richard, making sure I didn’t forget one thing…packing for a family of 5, for weather none of us had seen in a long time was daunting.

Like always last minute things came up, and stopped me from being able to actual pack for said trip. We were scheduled to leave Feb 16th, early Saturday morning. I had to be in training the wednesday and thursday (all day) that week, which left Richard having to take time off right before leaving. We had noticed Ezzy was feeling run down at the beginning of the week. She started to eat less, was on edge more, and quite frankly just not herself.

So Friday, 24 hours before boarding the plane, everything on my list had to get packed, house had to get organized, and last minute errands needed to be run before leaving the rock for 2 whole glorious weeks. To back up a little Ezzy had puked wednesday at dinner, which even though its not common for her to puke, we weren’t overly alarmed. She had eaten like a bird on thursday, but I just had assumed she was having tummy issues that are very common with CF, she was having bowel movements, peeing and drinking water and milk. I fed her breakfast Friday and within 30 minutes she was crying in pain and puked everything up. I immediately felt a pit in my stomach…but I quickly ignored it and kept looking at my every growing list that needed my undivided attention. I gave her some pedialyte and a bowl and asked her to sit on the couch while I packed next to her. She would let out whimpers, hold her tummy and say “me hurt mommy”. Then what little fluid I got in her soon was sitting in the bowl. I looked at her tummy, it was distended, and somewhat hard.

Thats when I went into autodrive…I quickly recalled reading signs of bowel obstructions on my CF mom FB site. I quickly made a post, explained her symptoms and then called our CF docs. The next few hours were horrible. I waited and waited for our docs to call us, left two messages. Tried to get them paged, (no help from the receptionist at Children’s) all the while watching my little one decline at a very fast rate. You see, puking for kids is scary, especially when they are little, but when you add CF into the picture, the risks and damage of dehydration comes fast, due to her cells being unable to hold onto salt. I had quite a few moms tell me that it sounded like an obstruction was taking place. I finally received a call back from our CF docs, thanks to my unhappy, and somewhat pushy husband…its in those moments I am reminded God knew Ezzy needed an advocate like her daddy. We were told to get to the ER ASAP!!!

I gently tried to get Ezzy ready, fighting the tears, and didn’t even take a second look at the mess my house was. We walked in and one of our nurses saw me and immediately recognized me from church, she then was informed that ezzy “was the child they were warned about”. One of our CF nurses called ahead to make sure that the ER staff knew we needed care ASAP.

My little champ, admist, her severe tummy pain, was the perfect patient. She took an enema without one single complaint and cooperated with the radiology tech during her X-rays.

An hour after the xrays,we were met by our ER doc, whom we had spoken with for less then 3 minutes prior to the Xray. He then dropped a massive bomb on me. He told me that he had been in communication with our docs at Childrens and the decision was that Ezzy had to be admitted. That we were going to be here for a while, she was very sick and we were not going to be going on our trip, the one we had saved over a year for and the one that we all needed after the year of health issues and attacks we went through.

Cayden was insistent on seeing Ezzy when he got out of school. He was really scared that the doctors were going to cut her tummy open. The scar on her belly reminds us daily of the rough start our little Ezzy had. When Cayden showed up, he immediately when into “big brother” mode, seeing his sister sick and not herself, he took it upon himself to try and make her laugh, God SO knew she would need him…I feel for the man who thinks he can take her away from brother and dad

Even Kyre was aware that something was going on, she went straight to her and laid by her side and was very serious.

We soon had to send her siblings on their way, we were told that an IV had to be done. Soon two nurses were having their way with Ezzy’s little tiny arm and ended with me about ready to litterally rip their heads off…it pains me to admit it, but when I watched my little 3 year old lay there, with NO fight in her, and have them poke her 3x, the last time for almost 2 minutes, digging the needle in her, and yes it really was a 2 minute ordeal the 3x around, all i wanted to do was scream!!! She let out a little whimper and didn’t fight with her arms, legs, or body…just laid there.

That was when the fear seeped in, it was in that moment I became terrified of what was going on in our little miracle, ever since the day of conception, every since the first division of her cells, her days were already numbered. I finally realized I was living the nightmare that so many other CF parents have lived, realizing the last 3 years with her have been a piece of cake. Sure we have had our moments of wondering what was going to happen, but they were so brief, nothing like the current situation I found myself in…everything was in slow motion.

The director of the CF clinic called me to tell me that if the prescription laxative didn’t work we were looking at an NG tube to suck the obstruction out, if that didn’t work, then surgery. He said we were looking at atleast a week of hospitalization, IF they didn’t have to do surgery.

Long story short, because I realize this post is the longest I have written…Ezzy defied the odds yet again!!

The moment we were told to go to the ER, I sent out texts to our friends, our family, the people I know who will drop everything and pray.

I had to tearfully said goodbye to Ezzy and Richard friday night, and was told I had to go on the trip as scheduled. NO THANKS to alaska airlines, who was going to charge us $1000, to change our tickets, even with documentation from the hospital.

Richard had complete faith that they were going to make the trip…I how ever didn’t have the same faith 😦 All i could do was let fear, anger, hurt, and despair tell me that the trip that had been a dream for months was now a nightmare.

After wrestling with God, Im not joking…I really had it out with him. I boarded the plane minus Richard and Ezzy and tried to not freak out and have an emotional breakdown in the airport.

Well, our overnight stay in Seattle was a night that I experienced God in a way I didn’t expect…I opened my hotel door due to a friend who had driven up with her family telling me to “come here” , to find my little miracle standing there wide eyed and saying “hi mommy”. 24 hrs after being hospitalized Ezzy was walking,talking, eating, and most importantly POOPING!

For this reason, I am going to do my best to remember that even though Gods ways many times don’t make sense, that HIS plans are all the matter. That the sadness that overtook me the night before, leaving tear soaked sheets, was turned to JOY.

GOD is good, and Ezzy’s health and healing are another testimony to the power of prayer!