I have been putting off writing my report on the recent conference I attended due to the fact that there was SO much new information that this stay at home mom’s brain had to download, but most of all because I am concerned that I wont be able to translate it correctly to my tribe…

I was shocked, excited, scared, any intense emotion out there I felt it, when the conclusion was made I would be the one going to represent my tribe at the National Indian Health Board Conference. I know I should have been ready, this was part of the work I knew I would be getting into, but I figured that the ruffling of feathers I have been doing during my short 8 months on the board would automatically mean that I would be benched for the conference. It came to a vote, and I walked away from that evening realizing I was going because THEY wanted me to go…

Never mind the fact that leaving my 3 babies for 6 days was terrifying, it was also intimating to think about having to dress professionally when I have lived in my faithful yoga pants for the last 6 yrs since leaving the work place, and then to think that I had to actually sound smart, sent me running to turn in my resignation…

My two sweet and giving friends, who seem to love me regardless of all my faults, dug through their closets and handed over professional attire that they had once worn before making the decision to join the club of stay at home moms. Their kindness can’t be overlooked and I just want to say I am so thankful for Kelsey and Deja, and the way they example giving hearts with no strings attached.

The day came for me to board the plane and say goodbye to my babies, Kyre had never experienced my absence, and I was a ball of nerves. I hugged them goodbye and tears clung to my eyes as my little man told me with tears he “missed me already”, then came the moment I tried to say good bye to Kyre, just to have her stiff arm me and cry, sadly she had figured out why everyone was crying. Ezzy, our tough girl, said “by mom!”…atleast one person in the house didn’t find sorrow watching the drill sergeant board the plane.

Alaskan Airlines, keeping up with their stellar customer service and putting clients first, managed to place my connecting flights” gates the farthest distance apart, and to top it off, leave 20 mins late each flight. By my last flight I was worn out and had successfully broken a sweat in 2 new airports, clinging to the hope I would see my bag at my final destination.

I woke the next morning and looked out at the amazing view from my room and said a prayer asking God to be with me. Humility, something that can come and go in a blink of an eye, is something my heart seeks God daily to give, especially when I find pride seeping in. I asked God to give me hearing ears, so I can go and speak for my people, just as God called Moses and through Aaron did. I asked God to make me a light, to protect me and help me to know what to do and say.

I walked out with freshly pressed pants, heels, and a fancy top and kept telling myself, “you can do this”. The next few days are where my dreams of the future will never be the same…

God placed God fearing women in my life, all who took it upon themselves to mentor me. They all held various positions in their tribes, one working as a consultant, one working as an IHS facility director, and one working as a health board member. Their mission in life was to make sure that I met everyone they possibly knew. I found myself at the end of each night, mentally and physically exhausted. My cheeks hurt from all the smiling and talking. My feet killed me from the heels that maybe touched my feet 3x a year for the occasionally wedding or event in small town .

I spent every break, meal time, and potential “me time” networking, many times not by choice, thanks to a pushy husband and my new mentors. As time wore on the the meetings grew in size and there was one thing that set me apart from others. As I surveyed the packed room of dark skin, high cheek boned, and long straight hair people, I couldn’t deny the disparity of ages. I was the youngest by atleast 15 yrs and the few of us 45 yrs and younger could be counted on both hands and feet. That night I was texting my experience with a friend and her hubby told me to read 1 timothy 4: 11-12. I ended that night with tears in my eyes and began to ask God to tell me what I was suppose to do with all this new knowledge.

The next day I had the opportunity to hear the president from the National Congress of American Indians speak. His name is Jefferson Keel, and as he said “I’m not here to tell you what a bureaucrat would say, I’m here to just state the facts”. He stated that the SEQUESTRATION shouldn’t be taking place upon the people who had owned 97% of the land, that “Funding is a moral and legal obligation from the US” The main issues he addressed were:
#1 poverty, the most pressing thing tribal leaders face today and many governing(congressional) leaders can’t relate because they haven’t experienced it themselves, which then leads to:
a. health issues
b. substance abuse
c. neglect of children=obesity, heart disease, suicide,social issues in school and with their peers (taking place due to the environmental and family factors that are effecting their social status).
d. domestic abuse

He also stated that, “some are becoming leaders because they are forced to be because of their current situations they are in” I found my heart racing, the tears fogging my eyesight, but more importantly I felt the nudging in my spirit, that the truth that was being laid out I couldn’t ignore when I returned home. This information that God intended for me to hear at this conference was the very thing to light a fire for my soon to be future. The very last statement he said was “we haven’t fought this battle like we have fought others”.

All of a sudden the information I had heard the day prior from the IHS director was different, the constant pushing of the Affordable Health Care Act, by people who stand to gain from the Native People, and the countless cries and demands falling on deaf ears for help from various tribal leaders all made sense.

Each workshop I attended, required me to lean on God, to point me in the right direction so I could learn and go back and share with my tribal leaders the impacts, decisions, and steps that need to be taken for the future of our people, the future of our children.

I lost count of how many people I met, and was in awe of the success of the tip my aunt had shared with me before leaving for the conference. She told me to make it a point to wear my culture, that it was really important to take pride in our heritage and share it with others. So my husband and I loaded up the kids and went shopping at a local store here in town. I have frequented this place quite a few times and the shop owner’s wife is usually cringing when I walk in the door because she knows I won’t walk away paying full price for anything. When I shared with her that I was leaving for a conference, she was immediately excited and told me that I was going to be going in style. I found myself with a BEAUTIFUL chilkat sharf, a leather hair piece, a wooden bangle, and some native art thank you cards, and a discounted price I never would have asked for. The scarf was my greatest treasure and allowed me to talk to so many people!

My last day in Michigan was a breath of fresh air. I was overjoyed to see that the conference ended and noon and was already dreaming of the pool I saw from my bedroom window and only graced once in the last 4 days. I was in desperate need of some alone time as I knew I would be jumping into mommyhood in less then 24 hrs. But that all changed when my mentors decided to rent a car and explore. We were staying at a beautiful large resort, that we hadn’t left in 5 days. I did however have the chance to run some of the land not on the resort thanks to deciding to follow some fast runners in a race the conference was holding. I was planning on walking it with my mentors, but they all knew that I was dying to run, so they sent me on my way…one lesson I learned was to make sure to not run faster then the person who’s responsibility it is to show where to turn…after running an extra 2 miles I found my way back, tired and dehydrated from the muggy Michigan weather. BUT, I did however still end up finishing in the top middle of the race! The race was put on with help from Billy Mills, the first american native to win an olympic gold medal, and the only us citizen to place in the 10000 m dash. I had the wonderful opportunity of meeting and yes, soon found out that we were family…I know, you white people are shaking your heads, but yes we shared our family tree and soon found out that I should be calling him “uncle”

Back to my last day…got side tracked with my other story :). We started out with a mission of finding some food and hoped to doing a little sight seeing. We stopped at a pizzeria and I thanked God for the gluten free pizza, since I had spent the majority of my trip picking at food and being very limited in my diet. We shopped at the tourist shops and I soon found out how much fun all the crazy tourist have here in our small alaskan town. But the part that had me ending my day with tears of joy and a sore belly from laughing, showed me God had orchestrated my entire trip. All the way down to getting lost with 3 navajo women on the outskirts of town in search of a lighthouse. We shared our experiences, stories, motivators that got us involved in the healthcare field for our people. We talked about our trials, how the substandard healthcare of ourselves, children and family was the underlying cause for us to desire to be a voice.

As I sadly said my goodbyes to the women who loved me like their own daughter, I told each one of them my sincere gratitude for reaching out to me and taking the time to introduce me to so many influential people. When my new choctaw hugged me goodbye she told me not loose sight of the future. That I am sharp, that I am capable of being the change that needs to happen, that I need to realize God gave me an amazing husband who supports all my endeavors, that God knew Ezzy would make me a mighty voice for those in need of adequate health care, but most of all that I am the hope of the future, that I am the one the torch is getting passed to.

So as I am digesting everything, I am finding my future a little clearer, and I am realizing that going back to school is on the agenda. If I am going to be a voice then I need to be an informed one. Richard and I have been working on the details and I will be applying to get my Master’s of Public Administration. As a friend recently told me, “if its God’s will then HE will foot the bill”. To all my friends who find joy in praying for others, will you add me to your list? I am aware that going back to school with 3 little ones will be a challenge, but I also have a lot of peace, realizing that each step that I have been taking in faith has lead to me my current role in tribal politics and healthcare. With God on my side to guide me and keep me humble, I pray I won’t disregard the responsibility that will come as I choose to reach out for the torch and pray that I won’t drop it.

As I have mentioned in past blogs, any chance we get to educate people we try our hardest. Local races is one of the venues we have alot of fun at. We had the opportunity to run with some friends of ours at the Family Fun Run at Wardlake. It was a typical southeast alaska rainy day. My little cousins were in town from Arizona and decided they wanted to run the race with us.

I had urged, well to be honest, told Richard he was going to run the 5k. In the past he has just done the 1 mile race with the kids and then cheered me on as I did the 5k on my own. I knew that he could handle the race since we had ran together in a virtual race just the month prior. I have to admit it was my favorite date this year. It was miserably cold and side ways rain was beating our house’s windows. My dad willingly came over and let us go. I had thought we were just going to do a 2 mile run, something that someone in Richard’s “shape” could do. We approached the turn around and he told me, “hey lets keep going”…really…I was shocked and wasn’t going to argue since training for the 1/2 marathon I find anything less then 6 miles almost a waist of time…truthfully!

So there we were running and all of a sudden I realized I lost my running partner, I stopped, turned around and went back for the person who looked like they were about to lose the big breakfast they slaved all morning on. At one point I heard him yell to me, “hey, do you know how manly I feel letting you take the lead?!?”. So our virtual race with all the other people around the world running for their CFers soon looked like the tortise and the hair. It was alot of fun, and he was a great sport about it and managed to keep his breakfast and part of his pride at the end.

The kids had a blast running the Family Fun Run. My mom even ran the 1 mile pushing Kyre, I ran with cayden in the front and Ezzy and Richard held up the back. Our little cousins ran their hearts out, not complaining and soon became proud of their accomplishment. Our friends’ little 2 year old even ran part of the race! She has been such a blessing in Ezzy’s life and has been a her social life. Richard and I started the 5k together, but I soon heard my husband wave me off and say, “GO, don’t wait for me”. I couldn’t help but listen, its really hard to hold back, so I double checked with him and looked for any doubt mixed with the pain written on his face from trying to keep a pace that was close to mine. I ran off, alone with my thoughts, praying, like always do for the little girl who has changed me in every possible way. Running for her has become my best therapy. Its the time of the week, I am guaranteed to be alone, uninterrupted, and its when I can talk with God. There have been many runs where I have had an agenda and in the end, finished with God showing me that its HIS desires I need to be asking for.

It was this same race last year that I ran and had someone come up to me after asking about my “breathing for Ezzy” shirt. I told her about Ezzy, tears building up, and handed her my CF bracelet and told her to think about my girl each time she ran. I honestly NEVER thought I would see her again, since she had explained to me that she didn’t live in Alaska.

I received a letter just a few months ago, with this picture attached.

The woman had hunted me down, I don’t even recall telling her my name. She told me in the letter she had been running for our Ezzy the last year and was SO excited when she ran her first 10k for Ez. She told me that her and her family would be coming up for the blueberry arts fair and was hoping to officially meet and maybe run together!

When my sweet friend Kelsey found out that we were going to run the blueberry race she took it upon herself to make “team Ezzy” shirts for our little support group. We had two other families from our church who wanted to stand/walk/run along side us. Kels took it upon herself to make shirts for ALL the little kids and their parents. It was a labor of love and she gave up many naps and evening hours when she could have been resting after caring for her own 2 little ones two and under.

Race day came and I anxiously waited to meet the woman who had heard just a small snippet of our story and chose to become an advocate. I was trying to squash the competitive person I had become since running. I loved race day, it was so much fun to run and try and beat my PR each race. But this race was going to be different. This race I had to go back to the very reason I picked up running at all. Thanks to my nervous friend who held me accountable, reminding me what “its really about”, I knew I had to humble myself and run along side someone who very well didn’t run the same pace as me. I decided to not listen to music and just run with this person I had only spoken to once since the race last year.

Cayden ran his little heart out, he ended up taking 8th out of 18th in the race. He was the youngest little guy to run that fast!!!! Our friends’ daughter ran with us, her very 1st race and was such a joy to run with. Her and cayden pushed each other and encouraged one another the whole way. Ezzy had a different experience and completely went into shambles as she approached the MASSIVE group of people watching the finish line. Everyone started cheering, those who knew our story cheered louder and I looked around and saw people in pure awe of the little 3 year who was defying science before their eyes.

The time came for the “team ezzy” stroller gang and me and my new running partner to get to the starting line. Our friends signed up to walk the 5k while we did the 10k. It was strange to run without music, I soon became aware of my surroundings. I could hear the slapping of many feet hitting the pavement, I could hear the labor of breaths being taken while running up the steep hill, but the thing I will never forget is Kels yelling to me “whose idea was this Sarah Harney?!?” I turned around at the top of the hill to see the stroller gang marching up the hill all pushing the youngest members of “team Ezzy”. My heart was full in that moment seeing our friends laughing and doing something that required alot of effort and time to do, just for a little 3 year old.

My 10k was amazing. I ran, prayed, and soon found myself praying for the woman running next to me. I started to thank God for the sun he decided to hide after 2 weeks of 70+ weather. I thanked him for the light breeze that was enriched with salt water. I thanked him for the ease my body was running at and more importantly the strong breaths I was taking.

The next thing I did was completely out of norm for me. I started to talk with my new running partner. She shared with me her families story. I soon found out why her tender heart was drawn to Ezzy. We talked about challenges moms face, the hard part of making decisions, and having confidence to be advocates. It was easily established that we knew deep down that our children came to us for a reason. I was able to share my faith with her, telling her that I had to rely on the fact that God had hand picked Richard and I for a reason.

We may not have won the race, but at the end as we hugged each other I knew that what happened on the pavement was meant to minister to my heart.

Its hard to not feel alone, its hard when your child looks normal on the outside, because soon the daily battle you are called to fight becomes a silent one. The race had provided me a chance to share my heart, to be heard and to be validated that it is hard having a sick child, and to be reminded that God chose me because at the end of the day I maybe weary but am no way near giving up.

I am currently writing this while nap time is taking place on this cold Fall day…yeah…I said it. I watched the first leaf fall on saturday during a very typical fall storm. There will be no more races for “team ezzy” to run in, but I can’t believe how much we accomplished this summer. Even if it was just to tell our story to few people who asked about our shirts, to minister to my momma’s heart, or to make a few people wonder about this little girl who’s call in life is to glorify God in each achievement she makes!

Richard had asked me on our Arizona trip to renew our vows. At the time it wasn’t something that I had wanted to, mainly because I was pregnant with Kyrene and the thought of having to wear a dress while fat and bloated wasn’t appealing in the slightest way. So I told him yes, but asked if we could wait until I was no longer pregnant and preferably not nursing a baby either…yes, I took the romance out of the gesture with my ridiculous rules…

He honestly didn’t bring it up after that trip, I believe that I had crushed his spirit and had in some ways let him down. I wasn’t going to be the mature one either and bring it up, leave it to me to be the stubborn one. Since him asking me to renew our vows infront of our missed friends in AZ, two anniversaries have passed. I figured that our current anniversary was going to be the same as it has been in the past, dinner out, minus children thanks to Nana.

While on his recent trip to Anchorage…yes, that man seems to travel alot there, and its never a quick trip. He came home and asked if I was willing to renew our vows NOW, now as in less then 2 weeks away, actually 9 days to be exact. My immediate reaction was to say NO, I have absolutely no idea why either. But when I saw his sincere eyes and he gave me his reasoning why it was so important to do them this year I couldn’t say no, and my list of reason “why not to” soon dwindled into nothing.

Richard told me that all I had to do was say yes, wear a dress, and show up at 6pm. He had all the details worked out and was fine tuning the vision he had in mind.

This is the part that I had to struggle with my annoying self, the person that likes to have everything organized “just right” and likes to have a say. The days leading up to the renewal, Richard’s cell phone would ring and he would disappear out to the chicken coup or would be texting alot in the evenings (something he doesn’t do, since men, well men I am around, don’t text with their friends, like us women who have to be in constant communication).

The day came and I was tense, I at the time just thought it was in large part due to my CRANKY children who hadn’t napped in 2 days thanks to the amazing weather that caused their overly planned mom to throw out nap time. He had taken a 1/2 at work and told me not to expect to see him till his normal time off.

I had the difficult problem every woman has…the battle we face everytime we have an event to go to…I had NOTHING to wear. Even my sweet friend Kelsey let me rummage her summer dresses. I had tried on a few, but none of them worked. I had conceded to the fact I was just going to go in jeans and a nice shirt. I didn’t have time or money to go buy a dress last minute in this town, where a “nice” dress would be a price those of you in the lower 48 would die to pay.

I calmly got ready and saw the shirt he had picked and then remembered a dress I had scored while shopping in AZ on our recent trip. I put it on, grabbed my precious pearls Richard gave me and immediately felt I had won the battle!

I nervously played with my purse and chomped on my gum while driving to the location he deemed appropriate. When I arrived I was taken aback by the most beautiful sign…

Leave it to my friend/boss, Kristy, to pull off such thoughtful and rustic/romantic decor. The time and effort she puts into things makes you feel like the things you are passionate about are really just things that you kind of like. I have watched her time and time again at events we do, pull out beautiful handmade decor and realize she really did her homework, got to know her client, and strived to put their personality into the event.

Her beautiful handmade chandelier, it was gorgeous!

The beautiful center pieces, using the standard mason jars…every detail provided this feelings of intimacy
The precious detail that I am SO SAD I didn’t get a picture of, was the rows of logs my husband had drug around the beach to make seats for our support system to sit on during the ceremony. It looked the pews you would have seen in a small chapel and made my heart stir, not just because of the time and effort it took for him to do it, but because as I looked around at all the planning he had done, I realized that he really does know me, and more importantly knows my heart.

Cayden walked me down the isle, admitting to me he was really nervous, and I was handed off to my calm husband.

I hadn’t expected for him to give a sermon, but shouldn’t have been surprised because if you know Richard, you know he loves to talk. The words that came out of his mouth were sincere, thoughtful, humble, and most of all resembled a man that strives to be what God has called him to be. He explained to our friends/family why he felt it was so important for us to renew our vows now. How the man that made the vows 7 years ago said/did them out of a formality, but know understands the need to say them, concentrated under God, now that his soul truly understands what those vows mean.

My grandpa White, who was officiating the ceremony even stated that Richard had taken his scripture that he had planned to read over us, Ephesians 5. As he had us recite our vows to one another, I looked into the eyes of the man I have grown up with these last 13 years and realized that the man I had said “I do” to 7 years ago is no longer present. As we promised to love, honor, cherish, in sickness and health, for richer or poorer” I couldn’t hold back the calm that I tend to have when in stressful situations. I felt my warm tears run down my cheeks because as we said them together I was flooded with memories of times it hasn’t been easy to uphold them. There were times I wondered if we were going to become that statistic.

I came from a broken family and always expected him to leave me and built walls to protect me. It wasn’t until one of our fights shortly after having Kyre, that he grabbed me by the arms, while I struggled to get away from him and told me (well, possibly yelled at me to make sure my thick skull could hear him), “I am NOT ever going to leave you, I am not your dad, so stop treating me like I am”…ouch.

The last 7 years of marriage have had their ups and downs, I mean really, graduation college, starting our careers, pregnancies, moving to alaska, CF diagnosis, financial struggles, and most of all just trying to remain devoted to one another in a broken world that tells you when the going gets tough to get out.

I am not saying that we have found the “secret” to a happy marriage, cause honestly I don’t think there is one. But we have found the answer, found the reason to stay committed especially in the moments we want to say hurtful things or run away. We have found that by making God the center of our marriage, by turning to HIM and HIS word that we can clearly see hope.

7 years I have watched my husband grow into a man of God, one who desires no other will, but that of his maker. I have watched my husband work hard, in crappy jobs to make sure that bills are paid and food is on the table. He has loved and cared for us and NEVER once gripped about the countless responsibilities that come with a family.

I LOVE you Richard Harney, thank you for your sacrificial love, thank you for caring for us, and thank you for leaning on God to show you how to lead us.

There has been quite a division on social media sites lately centering on a topic that I have in the past not shared my view on. I really to be honest don’t think FB is the place to be plastering pictures, sayings, or rants on said topic. I get on facebook to unwind and honestly hope that someone has posted something funny about the joys of raising children, or a new picture of their adventures, or best when someone makes light of the crappy day they are having!

Well, I can’t really stay silent on this topic anymore, it has been brewing in my heart for over 25 months now when I had to take a stand personally. I guess you can say I am at a place that I can finally put into words what my heart and mouth was unable to do so when the situation was put out in the open with little or no regard, as if what was being stated wasn’t a HUGE decision to make.

I can’t forget the day, the room, the weather, or emotions that still feel like they were felt for the first time even though it was over 2 yrs ago…

I had gone in for a routine prenatal check-up with baby #3. The appointment was the first time I got to hear the heart beat. I don’t care if its your first or your 6th baby, nothing can replace the moment you hear that sound for the first time each pregnancy. Even though it was a sound that put my ever anxious heart to rest, it wasn’t able to stop the looming question surrounding this pregnancy. Each day, quite frankly almost each minute during the first few months of my pregnancy my mind was my own worst enemy. We had closed the door to more children, grieving, but made the decision because the thought of another sick baby scared us.

SO when we were faced with the reality God had a different plan for us, I found myself hiding, going into seclusion, and throwing myself a pity party. Even though we had some support who were over the moon for us it wasn’t enough to discount the negative responses and reactions people felt the need to share.

After my provider cleaned my belly off and put down the doppler, she had me sit up and get ready for the next part of the appointment. If you have had children you know this part is when they ask about any nagging symptoms or concerns. It can be a quick part or it can take a long time based on what your hormonal pregnancy mind is obsessing over.

It was just a normal appointment for me, didn’t really have any concerns, well not any I wanted to share with her. I already had my ENTIRE support group praying for me and this little life God had entrusted to us. Praying for health and for JOY, something that was robbed by every single fear the enemy knew to put in my head. I had started feeling baby#3 at 11 wks. Just little flutters, but after being pregnant two times prior, I was without a doubt sure it was baby moving and not gas 🙂

Just when I thought we were done, she then informed me that instead of getting my 19 wk ultrasound here in Ketchikan, that I was going to be sent to Swedish Medical Center in WA. Not only did my provider need a higher def machine to look over baby #3’s bowels, (to ensure no intestinal block was forming, like Ezzy’s) but I was also informed that I needed to get an amnio to find out if this baby had CF or not…what came out of her mouth next, literally makes my blood boil thinking of it now…

My provider informed me that it would take 3-4 weeks to get the result of the amnio but, “to not worry, that an exception will be made if you choose to terminate the pregnancy, even though you will be past 20 wks gestation”

It was one of those out of body experiences that you see on movies where the actor sees something happen that doesn’t really take place. Its like time went into slow motion and I could see myself leaping off the exam table in my hospital issued gown attacking her, hands around her neck, with a crazed look in my eyes, like ANY momma bear would do to a threat to her cub.

I know that my verbal response was cold, that she most likely felt the frost as the few words I was able to form flew over my snarling teeth, “um NO, we are having this baby NO MATTER WHAT this test tells us”

I came home to my husband tears in my eyes, unsure if they were tears of sorrow, anger, or hurt.

I couldn’t wrap my brain around what was dropped on me just a few minutes prior. If you were to ask me to sum up the first 1/2 of my pregnancy with baby #3, I would have said FEAR, but that never once made me wish away the little tiny life that I was watching grow before my eyes.

Baby #3 was already started to establish a wake and sleep routine. One that never failed to mess with my sleep and required frequent trips to the bathroom late at night. I loved waking in the morning because the position I was laying in for a few hours was apparently getting old for said baby. Most of all I can honestly say the only time there was ever a smile on my face the first 1/2 was when I would get a sudden kick or feel a rush a movements from the never ending need to practice stretching arms and legs while taking up the limited space my unusually small torso gave.

After seeing baby #3 on the high def ultrasound at Swedish the tears of fear and worry came spilling out, the last 15 wks of carrying a burden I was not intended to carry came flowing out of me like a boat that sprung a leak. Sweet baby Ezzy was sleeping away in the ergo on daddy’s chest and the radiology tech spent over 1.5 hrs looking at every single piece God was carefully nitting together in my womb. When we received the news that baby’s bowels looked great and that everything was normal, we left pieces of the burden we were carrying in the back room of the radiology dept.

We began to soon worry about the needle that was going to be placed in my body. Not to say we hadn’t worried for the last 3 wks leading up to the decision we were being forced to make to even get one. Sweet baby Kyre (who we didn’t know at the time was a girl) had decided to put on a show for the radiology tech during her anatomy check. She was twisting, stretching, rolling, and doing anything she could to not lay still. Pure terror was written all over our faces as we walked into the room where the massive (I am NOT joking) needle was waiting to tell us the future of the life God was insistent to give us.

Shortly after the doc put the ultrasound wand up to my belly we saw little tiny Kyre had rolled over on her side and was taking a snooze. We could see her shoulders and body move up and down with each breath she took. As I am trying to describe this picture to you, I am fighting tears while writing it out. Because I saw this little baby exemplify life in every way during her scan to then watch her minutes later curl up and take a deep nap to ensure she wouldn’t be harmed while a foreign object invaded her safe home. It was yet another way God was telling us to trust Him, to trust the plan, even down to the forced amnio taking place, that He was in every detail and to Him be the glory if we would just lay our burdens at His feet.

So you might have figured out why I am feeling the need to walk down memory lane. Monday it was ruled that the serial killer, Doctor Kermit Gosnell, has been found guilty of murder of babies, many around the age of Kyre when we got the ultrasound and amnio done. Some of you reading this might believe he was convicted of crimes he didn’t commit. Some of you might not have any stance on Pro-life or Pro-choice because you haven’t been personally faced with it. Some of you might stop reading my blogs because of what I am going to say…

All I know is that when I was told and “exception” would be made for me, “to not worry”, that “IT would be taken care of” that I got to realize my own heart. My desire to speak up for the ones who don’t have a voice yet. My heart aches for the little lives that were thrown away and taken by countless hands all over the world and discarded into the trash out back.

I think back to watching Kyre living her short stint as an acrobat in my womb at just 19 wks and can recall all the times I felt her sweet little feet push against my stomach, making me stop and have something to smile about even if I was terrified she was going to be sick like her sister.

Our CF director told us that CF is going to become an “old person’s disease” here down the road. Due the big push in prenatal testing, along with the unfathomable amount of lives not given a chance because the soon-to-be parents don’t want an imperfect child. That we will stop seeing more CFers being born because of a woman’s right to choose.

I will tell you this, that saying Yes to Kyre, saying Yes to GOD, saying YES to the unknown has been the best decision we have made. I can’t imagine life without this little ball of energy who showed off her personality to us at 19 wks and who couldn’t help showing off her acrobatic skills even after birth.

So my hope is that if you or someone you know is considering the decision that is legally every woman’s right, that you share mine and Kyre’s story. That you tell them it isn’t a choice between Pro-life of Pro-choice, but its a decision to just say YES. Yes to the little life that is growing and waiting to change every single thing you thought you knew.

So I think that most of you who live by us have noticed Kyre has a little bling on her ears?!? It was a decision my husband made and had to follow through with on his own. I couldn’t bear the thought of taking new, sweet, tiny Kyre to get her ears pierced. Countless times we were asked if Ezzy and Kyre were boys as infants, thanks to their lack of hair and ridiculous amount of chub…the worst was when we were asked “whats his name?” (obviously ignoring the fuzzy pink bunting they were wrapped up in). So when I said I was ok with earrings, Richard marched back in…to be honest almost sprinted with kyre safely snuggled in her carseat, leaving me and the older kids in the car.

There are many times I think back to the decision that was made to get her ears pierced and realize how girly Kyre is. Kyre can fully walk in princess heels through out our home, which is mainly hard wood floors.

She NEVER goes a day without wearing atleast one tutu, if not 3 at the same time. Most of all, she loves to get in a princess dress and head to the livingroom and dance in circles. If richard or cayden are home, she will run to them and grunt to get their attention and patiently wait for them to say how pretty she is.

We had regretted not getting earrings for Ezzy when she was a baby. To be honest Ezzy was 6 months old the first time we even brought her inside a store. I am aware that might sound strange, even if you grasp a little on the world of CF. We were scared, well I don’t know if there is a word that describes how terrified we were about taking her in public. It didn’t help she was born in flu, whooping cough, and RSV season. We literally lived within our 4 walls and only ventured as a complete family to the outside world on Sundays were we knew we could somewhat control our environment, thanks to our amazing church family. Since we couldn’t stomach bringing her somewhere where overly friendly strangers would possibly want to touch her precious chubby cheeks or worse a sick person cough on her, there was NO way we were going to let a stranger pierce her ears.

After getting Kyre’s ears pierced we were sure Ezzy would want to follow suit. Well leave it to Ezzy to defy what is expected of her. We would ask her almost each time we went to Walmart if she wanted her ears pierced. We even asked when we were in AZ, her answer never changed. Don’t get me wrong, we NEVER pushed her, we just would ask her if she wanted earrings and when she said no, we would say “ok” and move on.

I had to wait to get my ears pierced…it was something that I had begun to dream about after watching my older sister get hers done. The rule was that I had to be 12 yrs old. Interestingly enough my little sister got hers at 9 yrs old, but who is paying attention right? I get why I had to wait, we were raised in a strict southern Pentecostal upbringing, and were breaking the norm by even getting our ears pierced. Waiting is something I think Richard and I can’t comprehend with Ezzy.

Well last week when doing a quick errand that I believed didn’t warrant a need to make sure teeth were brushed, pj’s were no longer on, and hair was brushed, Ezzy decided to throw a wrench in my morning. After dropping off our flat tire to get fixed, we drove by walmart and Ezzy quickly said, “mommy me get my ears pierced?”. I asked her if she was really, really sure. While looking in the rear view mirror, I saw my 3 yr old’s eyes light up and fists went in the air, followed with, “YES!”.

So there I was walking in to Walmart, un-showered, still in my gym clothes and thinking about the hot shower I had planned on taking after my planned 15 minute errand. Kyre still in PJs and rocking a milk mustache. Ezzy with matted hair, boots on the wrong feet, but masked with amazing determination as she led the charge to the jewelry department.

I brought her over to the jewelry kiosk to pick out her earrings. When I pointed out all the different designs (flowers, pink hearts, gold hearts, gold balls, and diamonds), my 3 yr old, didn’t even hesitate. Her immediate response was “DIAMONDS”, at the top of her lungs with so much enthusiasm.

She climbed up on the seat, with help from me since her little legs weren’t quite long enough. She sat there quietly and had a smile that no one could take away, not even the two strangers getting ready to use the piercing gun on her ears.

She shed a few tears after the initial shock of getting pierced and quickly reached for me to hold her. As I kneeled down to hug her and wipe her tears, I told her that she was “so big!”. When she was handed a mirror to see the new bling on her ears, the tears quickly dried up and the pain was long forgotten. What us women will do for the price of beauty.

There is a fine line between giving your child everything they want…I am very much aware of it. To be honest its something that has been in the back of my mind. I want to make sure Ezzy has a chance to experience everything her heart desires, but also want to make sure I don’t raise a brat. There have many SO many heartbreaking deaths of young children in the CF community recently. When I say young I am talking about elementary and young high-school aged kids. It literally takes my breathe away and I have to go and hold her tight and look her in the eyes and ask her if she knows how much I love her. Its so hard to not let fear dictate how to parent a child who is told 30s is what to expect if we can keep her healthy. I don’t want to have a single regret, even more as I am reading of parents saying goodby before they had the chance to take them to Disney, get their ears pierced, or let them go to their first dance.

I am part of a CF mom group on FB and I saw a mom post that she had a limo pick up her daughter from school for her 13th bday. I dont think this was an overindulgence, I actually loved the idea. Because to be honest, I think part of the reason I struggle with planning Ezzy’s Bday parties each year is because in a way I grieve its one less year of her life expectancy. Never mind the difficulty in trying to plan a party and making sure everyone is healthy last minute. It got me thinking that I should try to celebrate each day I have with her, and not grieve that she is getting older, and to try not to be scared that it means less time for me to hold her, dream of her future that is being tainted by an ugly disease.

I love how my girls run and seek their daddy’s and brother’s approval when they get dressed up. In the beginning I worried that my girls would only find self worth in a man’s eyes, and never feel confident unless they were told they were beautiful by them. But then I watched how Cayden came running to Ezzy when she told him in a teasing voice she got her ears pierced. He ran so fast, bent down and got a huge smile and said, “wow Ez, you are really pretty”. The smile on her face melted my heart. To be honest its my favorite thing to do, to watch my men stop what they are doing and tell our growing princesses they are beautiful, especially when they are yielding a light saber, hiding behind a batman mask, while gracefully wearing a princess dress. My men turn into mush, and tell the girls just what their hearts need to hear, that they are beautiful no matter what they are wearing.

I am thankful that my girls are running to their Dad and Cayden…to be honest I hope that it continues until they leave our home and decide to spread their wings and make a mark for themselves in this world. I am thankful they have Godly men who are exemplifying what it means to be a man of God. I am even more thankful the bond my girls have with them, because these men love them unconditionally.

My prayer is that they will hold out and wait for their prince, the man of God that will fit nicely into our family and show us how God heard our countless prayers for them. The men that God is shaping to handle my sweet little princesses, the ones who already love diamonds, don’t go a day without a tutu, and most of all will hopefully not waste anytime on kissing a frog, because they have seen what a true prince or king looks like thanks to their dad and brother.

I knew this question was going to eventually come, I just hadn’t anticipated it would be so soon. Richard and I have fought the all encompassing WHY, when it comes to CF and Ezzy. I honestly thought we would have had more time to brain storm, talk to God more, or better yet research how to answer Ezzy when she needed to hear an answer.

Well last week during a much needed nap for a cranky teething little sister, Ezzy and I found ourselves with the rare opportunity to paint. I quickly pulled out construction paper, making sure her favorite color was selected. When she saw the paint brush come out of the bag, her eyes lit up and I soon found a giggling 3 yr old stripped of her clothing (without my suggestion). She requested each color of paint we own to be carefully placed in a small dollop, not touching the other colors…poor Richard has yet another rigid control freak to live with!

We quietly had worship music playing in the background and soon found ourselves absorbed in our creativity. There was no need for conversation in the beginning, we both were enjoying letting our minds wander. My deep thoughts were soon interrupted and I was caught off guard by the next few words that came out of Ezzy’s mouth…

“WHY do I have CF?”…there was no hurt, frustration, or any other negative emotion behind those 5 words. She didn’t look up at me, she kept on swirling her paint brush across her purple paper and wasn’t affected by the awkward silence I was suddenly all to aware of.

Once I was able to gather up the pieces of my own heart, the shattered pieces of the damage done by that one word I have asked over and over, I soon found myself relying on the receiver of all the WHYs that came from a grieving mother’s heart.

I put my paint brush down, pushed the canvas to the side and reached out for her arm. I felt my pulse pick up and I prayed that I would have the right words to say, so that her little 3 year old heart and mind would be able to move on past what she was asking me.

I told Ezzy that God thinks she is really tough! The the long scar across her belly that grows with her as she grows, shows just how tough she is. I also told her that God thinks that she is really special and that HE knows she will work really hard to fight CF. She was quiet, didn’t really say anything after my brief explanation. I then told her that God really really trusts her to trust HIM. She then looked up at me and said “ok mommy”, and looked back down at the abstract art she was doing for daddy’s work.

I couldn’t believe her demeanor…yes I know that she is just 3 and that she doesn’t go deep in her thoughts or worries herself over the processing of major questions in life. I realize that when kids ask questions to give them just enough of an answer that allows them to have that burning WHY sufficed. BUT, you see Ezzy told me out of the blue during our trip to AZ that, “I have God in my spirit”. There was no prompting of that statement, there was no Bible story that we had told her in the days leading up, she was just playing in the shower singing to herself and decided to share with me what was on her mind.

It’s not the first time Ezzy has made a statement to show us she grasps more about life with CF then we give her benefit.

Cayden has been pestering us for quite sometime about wanting another baby. I know…I feel for his future wife. That little boy just loves babies and to be more specific, sees the injustice of sleeping by himself, so he put in the request of not just any baby, but a brother. One day after his request being ignored by his worn out momma due to a teething baby, Ezzy piped up and said, “I don’t want another baby, I don’t want the baby to have CF”. I turned to Richard, looked into his eyes and saw the same broken spirit that I was being engulfed by. I felt the tears blurring my vision and got up and walked away.

Just a few nights ago Richard was saying prayers with the kids, thankfully I had evening plans, because I don’t know how I would have reacted to what Ezzy prayed. When we pray each night as a family, we all say what we are thankful for and what concerns we have. Ezzy generally thanks God for Nana, food to body, and mommy’s toe, ankle, or leg (thanks to my training schedule I have been hurt alot lately). When I came home from the baby shower Richard told me Ezzy thanked God that, “Cayden didn’t have CF”.

It’s painful to not have the answers, especially for me, because I find peace in the answers. Even if its not what I want to hear, at-least the WHY can high tail it out of here. When it comes to CF, I sure as heck don’t have a single answer. I’m not sure that what I told Ezzy was right. During my recent runs since she asked me, I have found myself burdened to pray for the people she will need in her life, people who will be able to speak truth and love when she is angry at the battle no child should ever have to fight. I am becoming all to aware that I need to be praying for her to never want to turn away from her maker, but instead run into HIS arms when the darkness is closing in.

I can’t get a song out of my head, NO MATTER what else I try to play. I don’t know if it’s God trying to tell me to hang tight or if its a song I need to introduce to our church for someone else to hear. But the first few lines of the song go like this:

“the why, the question that is never far away
but healing doesn’t come from the explained
Jesus please don’t let this go in vain
you’re all I have all that remains”

I know that “WHY” isn’t done haunting our family’s minds and hearts, but there is one sliver of hope that I am holding on to. It’s one that I have just been given after chewing on Ezzy’s recent realizations. It’s that her discerning heart is being molded and shaped, being prepared to handle the battle she is being called daily to armor up for while wearing pigtails, and learning her ABCs. Yes, its not fair, but I am seeing a mighty warrior, one that thankfully has “God in my spirit”

I am still in complete shock from saturday morning’s race. I had been preparing Cayden for weeks that the Sourdough Stampede was coming up. It was the very 1st race he had ever run last year…I know that kind of sounds silly saying…because he is only 5 and most kids probably can’t admit to a race completed unless it was mandated from their P.E. teacher. We had the idea to allow him to race last year when a friend was having her 5 yr old run. At first I was really nervous to have Cayden participate who was at the time just a few days past his 4th bday. Cayden was totally psyched to run and the enthusiasm soared when Richard had designed t-shirts for all of us that said “breathing for Ezzy”. Here is what took place last year at the sourdough stampede…

I had made the decision to run with Cayden, mainly because I was the only one brave enough out of Richard and myself to go and run a mile in absolutely no shape. Richard pushed the girls along in our jogger and would let Ezzy hop out from time to time. I remember during the race Cayden looking up at me and saying “come on mom, lets go”…slightly discouraging when a kid half your size is telling you that you are SLOW. He ran his little heart out and completed his 1st race in 12:23!! The very next thing he did, shocked me. He gladly received his lollypop and then took off back on the race route. I started to chase after him, trying to figure out what he was doing, I could honestly barely move, I was worn out. By the time I got close to him, he looked up and said, “mom, I have to go get Ezzy!!”. I then watched cayden find her with all the other kids who found the one mile just as hard as me. He reached out and grabbed her hand and told her, “good job Ezzy! isn’t this fun”. She was soon overwhelmed with all the people cheering at the finish line and turned to run to one of her parents. But he kept hold of her and told her that they had to finish together. I watched my 4 yr old boy become the biggest advocate in her life in those few seconds. He cheered her on, saw that she was scared and said just the right words to get her across the finish line.

I was hesitant to throw out the race this year to Ezzy. She hates big crows, any attention drawn to her by people outside our small support group, but most of all hates to do something that YOU might think is a good idea. Obstinance pulses through her veins at in an unmeasurable amount. I knew that Cayden being the high achieving 1st born would be thrilled to get out and run the 1st race of the year. But didn’t want to even mention it to Ezzy.

One day during cayden and I’s conversation regarding running, Ezzy piped up and said, “I want to run with Cayden”. I explained to her that this year daddy wouldn’t be there to push her in the jogger, due to flying home from a business trip in the middle of the race. I told her that if she wanted to do it then she would have to run/walk the whole way, that I couldn’t carry her. I had injured my ankle the week prior and was already concerned about running the mile with Cayden and then doing the 5k immediately after.

Well, her mind was made up, (thankfully I didn’t mention it or she never would have had any desire to participate). She told me she wanted to have “strong lungs and no gunkies in my lungs”, “like mommy”. She has asked me alot during my training for the 1/2 marathon coming up in a few weeks, why I run. I have always told her that I want “strong lungs and to get the gunk out of my lungs”, it was the only way I could describe to her the importance of the choice I made less then a year ago. The choice I made to be an example of health rather then an imitator, for a child that needed an example.

We headed out to Walmart a few days before the race to find her some running shoes. Every woman’s dream that is apparently innate was written all over her face. She ran and hugged shoes and said “I LOVE these shoes”. She had to try on every single shoe, including dress shoes until she had to make the painstaking miserable decision EVERY woman hates…to just pick one pair. When that decision was made she turned to the aisle of shoes with some remorse or regret over the shoes she finally decided on, the ones that were quickly thrown into the cart before myself, cayden, or Kyre had a meltdown after the time spent down said aisle.

With the help of her new running shoes and some incentive from her brother, Ezzy soon decided to put on her running shoes every day and run up and down our hallway until she was out of breath. I would see this little blob, with crazy curls bouncing in every direction zoom by. When I caught a few glimpses of her face, there was a huge smile placed from cheek to cheek, followed by a very focused and determined look. One that I am told melts daddy’s heart because all he can see is me when she has that look.

The day of the race came, Ezzy and Cayden could not contain their excitement. I don’t know if they were more excited about going and eating pancakes at some random place or the fact I promised they could have my “running” cereal before leaving. They call my cereal that name, because its super expensive high protein cereal that I started eating when I started running, and I don’t SHARE!

The got dressed in their CF shirts and followed me around the house, asking every few seconds if it was time to go yet…I eventually threw them in the car because I really wanted to get dressed without 6 eyes staring at me.

We were blessed to have Cayden’s teacher join us, and she ran with Cayden so that I could run with Ezzy who definitely wouldn’t be able to keep up with brother. My mom also offered to push Kyre in the jogger on the off chance Ezzy couldn’t do it. She just got over a long month of antibiotics and horrible cough just 2 weeks ago, and I was worried that running in the cold morning air was going to hurt.

Cayden and Ms. Kendra took off when the race started. I was SO thankful in that moment that God provided someone for him to run with so that he could reach his goal of beating his time last year 🙂 I wonder where he gets that from…

Ezzy ran her little heart out, we passed a few older kids just before the .5 mile turn around and I couldn’t believe that my little 3 yr old was holding her own!!! Shortly after the turn around she reached her wall and started to cry, she had lost sight of her fast brother and didn’t see a point in going on. I reminded her that Nana and Kyre were waiting for us, with hopes of seeing Nana, she walked for a few seconds and picked her pace up. Nana and sweet Kyre (who had been holding her hand out for all the runners to slap on their way past) were soon within our sights. We were just a little over .25 miles away from the finish line and soon faced with a child that had NO desire to finish. Nana had the great idea to tell Ezzy to race Kyre. My mom, who isn’t a runner, soon found herself running and pushing the jogger. There we were grandmother, mother, and little sister, giving our all to see our Ezzy cross the finish line. This memory is one that I hope to never loose. With giggles and beaming faces we were able to push through a little more. Less then 200 meters away Ezzy then again started to tear up and said she needed to spit. She was not joking, she spit out a huge glob of gunk, I was SO stinking excited when she did this. I have heard from countless adult CFers who care about their health, that running is one of the best ways they clear their lungs!!!

I got down on my knees and wiped away the tears she had and told her that we could walk, we didn’t have to run. But that daddy was waiting for us at the finish line. I asked her to wipe her tears and run, that sometimes running is hard, and mommy wants to cry during some runs, truthfully. She perked up and immediately had a new drive to finish. When daddy was within sight, he came running up to her and grabbed her hand. Cayden was there waiting as well and we soon crossed the finish line, hand in hand, as a family.

I am certain that most people won’t understand that reliving this precious day is one that is going to bring tears to our eyes for awhile. I fought tears welling up inside when I saw her smiling and running as fast as she could. I fight tears when I think about the races down the road that she will have to opt out of because of something that is fighting to take her breath away. But for now, the tears that are present, are tears of JOY, tears of hope, and tears that God has allowed us to have, because HE knows that we will do everything in our power to help Ezzy run to LIVE.

Easter has come and gone, admits all of the craziness with planning the worship for our church, providing hot lunch for Cayden’s school as a fundraiser, and having Cayden’s party all in one weekend, I have had some time to think about the mate God graciously gave me…

When I first started on worship 3 yrs ago, we only had Cayden. He was almost a year old, close to being weaned and becoming less and less attached me, well, to be quite honest the boob. As freeing as it felt, I also felt great sadness seeing my little baby, my first born pass me over for his cool and exciting dad. Seriously, cayden would stop what he was doing and coming running to do the door the minute he heard daddy come home! With this new found freedom I was able to start my first experience in ministry, as part of our church’s worship team.

After having Ezzy, and the trauma of her birth, sudden surgery, and heartbreaking diagnosis, I honestly believed my days were over on worship. Shortly after returning home from our brief stay in Seattle, I soon found out that the call to return to ministry was there and I was letting fears push it away. I was approached by my husband and was told that it was time to go back to worship. I immediately fought him on this, there was no way I was going back. You see I was in one of the biggest battles of my life, one that really shook the foundation I had, tested my faith, and quite frankly I felt like a fraud being up there, singing songs about hope and worst “trusting” God in his plans. After putting aside all of the doubt, I let the encouraging words my husband spoke and the still small voice tell me it was time. I soon found myself back on worship just a month after returning from our stint at Seattle Children’s.

To say being on worship with a “fragile” nursing baby and a two year old is a complete understatement. There were many Sunday mornings were stress levels escalated and the tempers and passionate souls that Richard and I have,got the very best of us. Then to add the lingering cold and flu season on top of that, it seemed like I was going to church by myself every other week, leaving my husband at home, away from fellowship and the word, so that we could protect tiny Ezzy and her immune system.

We seemed to finally find our rhythm around Ezzy’s 1st bday. Richard and the kids were going to a friend’s house each sunday morning during practice and it was close by our church, which saved me having to make the drive back into town to nurse and get everyone out the door in a few minutes to make it back in time for the service. A huge relief took place when Ezzy soon gave up the battle and broke down after weeks of fighting and drank milk NOT from mom.

Life with Ezzy definitely impacted and shaped how I participated in worship. It never failed the weeks I was consumed with fear and worry regarding her health, or more importantly the life expectancy that was always brought up at EVERY single doctor apt, every single month, was when I heard from God.

Where I was at spiritually soon was tested again with the huge surprise a new baby was on its way to the Harney family. Again soul searching was what drove me to find a deeper understanding to what God was entrusting our family to handle.

Through this all, I have been blessed to have a husband who has been the epitome of sacrificial love. Each Sunday, (I now have worship every sunday, as opposed to twice a week, like it was in the past) I watch my husband go into the trenches. I can say this because I live with these children 24/7, who can show a side of themselves I dread, faster then I have the chance to armor up and prepare for battle…seriously, I am NOT joking.

It wasn’t easy in the beginning, and many times words were said that shouldn’t have been said, mainly because someone felt like a martyr…admit it honey…you KNOW you did or because a control freak couldn’t let go. It took time for me to accept that when I came home from worship practice that the house was going to look like an atomic bomb went off, in every single nook and cranny. There were many sundays I was quite frankly embarrassed someone was going to notice that Richard didn’t adhere to some of the most basic fashion dos and don’ts while dressing the kids. But then there came a moment when I realized that I was really, to be honest, being a self absorbed brat!

Here was my husband, getting up earlier then he wanted to on Sunday, after me waking yet another baby while the rest of the house slept, so that I could get to practice. Here I was leaving and being a part of a public ministry while he sat in the back row every sunday, unnoticed or acknowledged for the sacrifice and time he was giving up so that his wife could sing each sunday.

I came home from practice Easter morning, nervous and anxious. I had prepared myself on the drive back in to town to chill out, to not nit pick if the bowls of half eaten oatmeal were still on the table and not in the sink soaking. To not make faces if it looked like my girls decided to try on every single piece of clothing. More importantly, to not critique my husband’s method of getting 3 children ready on his own, and accept we are always going to prioritize and do things differently.

To my surprise, there was my beautiful family, dressed and ready to go as soon as I pulled up in the driveway. Everyone was smiling, the girls were in there poofy dresses, tights and head bands on, and not in tears (which is a norm on sundays). My son was dressed in his suit, freshly pressed shirt, thanks to dad. Better yet, there was my husband smiling and asking me if I needed food or coffee. We were able to walk into church, get our free family picture taken, without exchanging hurtful words…something that has happened in the past due to stress, and best, without looking disheveled or worn out, but instead ready to celebrate our Savior!

Just as I was getting prepared to talk to the congregation about sacrificial love, there was my husband modeling it, and the best part was that he wasn’t asking anything in return. I know that there is NO way I could be a worship leader if it wasn’t for the unconditional support I have been given from my husband. I know that I wouldn’t be able to have courage to briefly speak each sunday, share my heart, or learn to be a leader in ministry if I didn’t have a husband showing me what leadership under God looks like.

As I am getting ready to crawl into bed for yet another night away from my best friend while he is away on a work trip, I am thankful for the mate God has given me. Thankful to have a husband that models Ephesians 5 to me and our son and daughters. Tonight I am thankful that I have been given the opportunity to follow the plan God has for me, because I have been given a husband who has apparently grasped the TRUE meaning of sacrificial love quite sometime ago.

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.

.
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.