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.

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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!

As if Im not busy enough…I decided to run recently in our local Tribal elections. I know,I know…most of you are probably thinking is she nuts?!? I don’t know how many times I have been questioned by other woman on whether or not I have enough time to do it. For the most part, the support I received was actually surprising. Little did I know that being on the front page of our newspaper would have people I know well, not well, or not at all coming up to me days following the article.

To be honest, I didn’t think my decision to run for the Advisory Health Board was such a big deal. I soon found out, I was greatly mistaken…

I showed up to the open forum for the candidates completely nervous! Feelings of incompetency wrecking any confidence and worst, completely unsure of what I was walking into. Let me back up, right before the open forum I heard the rumor mill of some things that took place at the last Tribal Council meeting. Which left me wondering if I had what it took to fulfill the job being asked. I prayed profusely as I watched the microphone go from one candidate to the other…Im sure I was probably muttering prayers loud enough for the person sitting next me to hear…when the moment came I decided to stand up and speak. I said what was on my heart, spoke as clear as possibly, and quickly sat down with peace. If you were to ask me what I said, I barely recall, and can only say that the Holy Spirit guided my thoughts and mind. Which was affirmed when an elder stood up to thank the candidates and surprisingly singled me out and told the elders they needed to stand behind me, that I was the very change needing to happen…um, wow, Im sure my face showed my complete shock!

Well, last monday I was sworn in at the Tribal Council meeting…yes I won!!! With what I am told an overwhelming support from the KIC community, young and old. I was approached by faces I have not ever seen, greeted with a hand shake and then told by one elder, “so YOU are the one we all voted for”

As I stood there, right hand in the air, standing straight and tall, hoping that all the old and respected faces of the elders would take me seriously. They have watched Tribal Council & Health Advisory Board members come and go through the years, watched our people silenced when concrete needs were addressed regarding the substandard care at the clinic, and sadly had to personally experience the neglect in their health and physical needs. I all of sudden felt tears well up in my eyes, I was completely taken over by all the emotions I felt when we were plagued with the political side of attempting to receive adequate care for Ezzy, and the countless roadblocks throw at us from the administration, clinic staff, and council.

Dont get me wrong, I am not on a vendetta. I have seen what that can do…and am worried when those people get elected. I am here, in hopes that I will be the voice of those families and individuals who don’t know their rights or have been silenced.

When I spoke those words, “I solemnly swear to protect and advocate” I meant it with every fiber of my being. Especially the word “unbias”

After sitting through my very first meeting as an elected member last night, I still am wondering what this year has in store. I soon realized the issues I have seen are just a small part of the big picture. Im learning that I will need to start developing a thicker skin, but in a way that doesn’t leave me jaded. So when it comes to it, I will continually ask God to tell me how to serve, how to honor Him in this new role that He has given me, and trust that whatever Im suppose to learn from my stint on the Health Board, that ultimately its part of how God is shaping me

I will leave you with this excerpt from the book, “Roberts Rules of Order” which I have an inkling I need to start studying soon for the storm that is brewing

Life with 3 little ones is utterly exhausting, in a good way, but my goodness. From 8pm-5am it’s finally about us…okay I guess from 8pm-11pm, because us old fuddy duddies can’t keep our eyes open past then.

One of the main reasons we moved back to Ketchikan wasn’t because of it’s awesome weather, ha, 13 ft of rain a year, please, I think we broke that record last year! It was because of family, more importantly my mom.

When you enter the world of parenthood you have to make the choice to then accept that your life is no longer yours and that “sacrifice” will be the word that pops in your mind when you even dare to think of yourself. If you don’t accept it and try to fight it, you start to act like the child you are attempting to raise.

With that said, throw in cystic fibrosis, and you multiply that by 100, no joke. While most young parents our age schedule big Friday family nights with extended family or game nights with other families with small children, we on the other hand have the same Friday night date, just the 5 of us. No sitting at the table with friends or family and laughing or joking while the kids entertain themselves. No spur of the moment social life.

Don’t get me wrong, I LOVE, LOVE, L.O.V.E. my family, but if I had to be honest it gets lonely and sometimes reconnecting with Richard is such a challenge. Especially when our talking tends to be centered around the kids and one way or another CF.

So when my mom texted us last Friday to ask for the kids, I said YES!!! I found myself almost giddy, thinking about dinner with JUST Richard, hot food, that didn’t have to be cut up in tiny pieces, flown on a spoon, or better yet thrown on your new shirt! I started to plan my hair, what clothes I would wear, you know, the good clothes you only wear when said children wont be around you and began to salivate over food that wouldn’t be prepared by my worn out brain and hands.

We decided to break away from our usual date location, sorry good old Oceanview, and we made our way to the very place we sat 12.5 yrs ago on our 1st date. Good Fortune!

Hello table #13, hello my best friend, the man who made me run home that night to my mom all flustered and in awe that my heart could have those feelings after one night.

Yes the person sitting across from me no longer wears a 29 inch waist pant, thanks to my skills in the kitchen! Or better yet has more grey hair then my dad, keep it up babe! You will forever make me look young! But I like it! I like seeing how much we have grown up together.

3 hours later, few stolen kisses, okay maybe more then a few, bellies & hearts full we found ourselves driving back to our babies, back to the craziness awaiting us, back to the life God knows we can handle and will make sure we can escape and remember how it all started and see we are truly blessed.

We live such an isolated life here in Ketchikan, in many ways, but the one that I feel the most has to do with CF, so any connections, any conversations, or looking to other people who have a personal experience is through the internet.

I first heard about a blogger with CF through FB. I came across a post she had made about turning down a set of lungs. She had made the tough call due to the potential risk of taking them based on the donors past life. Shortly after she wrote a quick blog about the peace she had, that even though she was in desperate need of lungs she knew in her heart the right ones would come. If you have ever seen the process of getting “the call” for a much needed transplant…I honestly would be shocked you haven’t in our world of documentaries and reality TV, you would know how incredibly nerve rattling they are. She had to go through 2 “dry runs” as she called them, 2 phone calls, 2 frantic rushes to the hospital, 2 pre-op admittance and tests, all to find out that the lungs she was literally holding her breath for weren’t THE ones for her. I remember one post she had made, she was discouraged, questioning IF it was ever going to happen, IF she would ever get her 2nd chance.

I remember the day she made the post that she finally got THE CALL, finally got the go ahead and moved forward with the double lung transplant. To say the road of recovery was difficult is an understatement to say the least…seriously don’t take my word for it, check it out on her site: kellystransplant.wordpress.com

Today I read the heartbreaking news she lost her life. Tears began to well up in my eyes, I fought feelings of deep sadness for a person I never met, had a conversation with over coffee or personally got to see the mighty advocate for CF she had been. She had been having struggles with her new lungs, but ultimately passed away due to a stroke…crazy right. Her whole life, the last 38 yrs she was told more times they she could ever count that CF would take her life. Yes, because of the CF she needed this surgery, because of the surgery she suffered a stroke, so I guess you could say CF won. But I don’t believe Kelly or the many people, lets be honest, she had over 2000 people following her on FB, thought this was how it was going to go.

All day today I have been reminded of James 4:14 “Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes.” We aren’t promised tomorrow, we aren’t promised a minute from now.

I get so wrapped up in the future the doctors want us to accept for Ezzy, wrapped up in the two letters my 4 yr old knew before any other letters when learning his alphabet at school. My stomach turns to nots when I hear about another life lost to a disease that has made parents stand over graves and say goodbye to the children they had so many hopes for. My deepest fear, which sometimes makes me hold Ezzy at arms length, horrible, absolutely horrible to say. I can’t fathom the void she would leave…so I find myself building walls up.

This is when I need to hold on to the fact we aren’t promised tomorrow. I need to accept that when God decides to take Ezzy home its never going to be a time that I expected. I realized today that I am getting hung up on something that shouldnt have a hold on me.

I guess this is why I go through waves of reaching out and being connected to the CF community. Many times its because I don’t want to hear the struggles, the countless hours of therapies, hospitalizations for little kids, kids that are separated from their families because they can’t breath at home.

I want to sometimes live in this deluded safe little bubble we have put our family in and block out all the darkness that surrounds those two letters.

But today, today I am all to aware that that is not healthy. That if I want to raise a courageous, hopeful, and unashamed advocate, then I need to start processing the things that are already stacked up and waiting at her door. I need to rely on the fact that God chose us to be her family, HE chose us to not raise her in fear, but instead chose us because He knew she would need us, but more importantly that we need her.

So today, I am choosing God to be my filter in the scary world of CF, I am asking Him to show Himself to me, to quiet the aching heart of a mother who is terrified to lose the little girl who shows me daily how wide, how deep, and how great His love is for me.