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.