March | 2014 | psalm139momma

6 years ago, I held a tiny little human who was the result of our lives intertwined together on our journey of married life. We were so anxious for Cayden, I had been going in for daily stress tests since he decided to enter the world on his time and not on his due date. We had gotten up, stuffed our faces on a late breakfast and were heading out the door for a hike when my midwife called us in. She said “today is going to be the day” she was getting ready to be off for a few days and didn’t want to miss his arrival. I came in expecting to be told again that my body wasn’t ready. Within a few minutes I was asked “did you feel that?”, I told the nurse yes, that I had been feeling those sensations for the last day and figured they were Braxton Hicks…apparently I was wrong and was in full blown labor!

As everyone was getting dressed in their best sunday attire and possibly having Easter Egg Hunts before heading to an Easter service, we were in the hospital with newly acquired titles that seemed unreal. It was traumatic birth, leaving Cayden rushed to the NICU and me being fervently worked on. It was all a blur, I held him for just a few minutes and he was gone and my consciousness soon started to fade. Richard was torn on who to be with, but was assured by my mom that she would take care of her baby and he should go and take care of his.

All I wanted after 12 hours of pitocin (thanks to my body stalling out), was a dr. pepper, some jojos, and a bbq ck snacker from Kentucky Fried Chicken. Thankfully uncle Jonny had saddle bags on his motorcyle and he stuffed the food on one side and then drove ever so carefully with the soda between his legs to the starving new mom. Aunt Frances showed up at the house with a red bull in hand to pick-up the new dad that had passed out on the bedroom floor after a quick trip home to shower and change clothes.

The 5 minute drive home was overwhelming, here were two babies loading up a baby into a car and somehow they convinced God they could be parents!

Even though we were far away from our family in Alaska, we had formed our own family in Arizona. Our friends who were not married, engaged or parents surrounded us and made sure we were prepared for his arrival. Kelley threw a baby shower that left us not having to buy diapers for 4 months! Our pastors came and annointed cayden with oil and prayed over his life. My mom and sister stayed with us and made sure that we got settled in our first week of parenthood. We could barely keep our eyes open and were so thankful we had help.

As I think back on March 23, 2008 I can’t believe 6 yrs has passed.

Cayden Harney, I will never forget the day you learned your first name is actually William, pure terror was expressed and your 3 yr old self could not comprehend why on earth we called you Cayden.

You recently told us how you felt called to tell people about God, how your new school never mentions something that your soul longs to know and share, so much so that you will corner your teacher and friends and ask them if they know who God is…just to then be given a mini sermon from your 6 yr old heart that explains who your maker is.

Will you be an evangelist when you are grown? Your courage, your love to seek justice, but to also give mercy astounds me at times. You can’t help but share your discovery of God’s truth!

You interrupted me one early morning during my bible study and wanted to know about the lamb’s book of life, about the Tower of Babel, and how to make sure people get their names in that sacred book. After having a theological debate at 6:30 am you, you looked at me and said, “well my name is in that book” and then quietly got down, sat and watched mind numbing Sponge bob.

You can drive us girls up the wall without even trying, there are days when you torment me so much that I’m almost giddy as I approach your school, knowing that we will get a few hours away from your mind that is ALWAYS going.

Then there are moments when I don’t want you to leave us, like the other morning when you built a fort for your sister who didn’t want to do therapy and was close to sending me over the edge. How you have asked to go and wake the girls each morning of spring break this week so that you could be the first one to fill the 2 yr old’s love cup up. You patiently waited your turn on Fat tuesday as daddy slaved away making crepes, as we ate them faster then he made them. Then you offered up your turn in line over and over because “mommy and the baby needed” them more then you.

We have to tell you on a regular basis how old you are to explain why we are having to say no. Yes, sometimes we are saying your age because we need to remind ourselves, that you are still a little guy.

Daddy and I were talking about your birthday and we couldn’t believe that YOU are the reason we are parents, YOU are the reason we started to live for someone other then ourselves, YOU are the reason your daddy found his salvation, in your’s and our maker, you gave him drive to finally finish school to provide for his new family…

and YOU my son are the greatest answered prayer God has ever given us.

I can’t believe the depth of your understanding, your heart, your love for people, especially when they don’t deserve it. All that I know is that the purpose God created you for is going to be more then my mind can comprehend.

Thank you for modeling unconditional love with me. There are times you know me better then anyone else, because you have spent so much time with me behind closed doors, watched me push you aside when we lived in the Ronald McDonald house while Ezzy was in the hospital, comforted me when the lonely life we were suddenly called to got to me, yelled at me to stop picking up stuff when pregnant with Kyre, just to offer to do it for me, and now stop me when I walk by you and cup your hands in a funnel to share your thoughts with the baby sister that has yet again made your mom many times be inpatient with you. You have never held my faults over my head in the 6 yrs I have been learning to be your momma, a mom that many times has to seek God on how to be because my human nature gets the best of me.

We love you little man, we are so thankful for the call God has placed on your life, we can’t imagine a day without your sarcasm and we know your insight to life’s problems many times leaves us humbled and honored to be your parents! Happy 6th birthday, my favorite and thank God, only son 🙂

She is a mess, she literally has to be peeled off the floor, her hair is matted with tears, her eyes longing to tell a story that would be the bridge of miscommunication taking place, but yet there she is in her room, screaming at decibels that make you feel like the piece of sanity you reserve in your back pocket was just pick pocketed from you…

The battle of the wills is in full swing in our home. So much so that Richard fully walks in the door at 4 pm and knows that he will be meet with an expression on my face that says, “welcome home!…your turn!”

I will hear the door open and then a gentle voice as the door is closed behind him. How does he do it? Maybe its because he is only around them for 3-4 hours each day, not ALL day like me. Maybe its because her emotional instability genetically comes from him. Maybe its because he fully grasps her life with CF and in return musters up the strength to completely get down to her level and peel her off the floor and hold her so tight and just long enough for her to tell him “i don’t know how to stop”.

This is our life right now. Tantrums, explosive ones that rattle you and can fully take your fun family day and chuck it out the window leaving shattered glass to pick up and cut your finders on.

We sat down last night and tried to figure out what is going on with her. As the tears and frustration finally soaked my shirt, I realized that I have been asking so much from her right now. I am aware, yes thanks to my mom, husband and the rare brave friends, that I tend to have a “suck it up and move on” way of dealing with things. Its a coping mechansim, it is the way I have dealt with stressors in my life since the time I can remember…thanks to some genetic gifts my mom gave me.

I have taken her burden and in a twisted way made it mine, analyzed it, and come up with a logical way to deal with it. Leaving her to come up against a mom that isn’t always grace giving when her 4 yr old self can’t comprehend why she has to do therapy again since it “takes FOR-EVER” or why mom is making her eat another calorie packed snack when all she wants is a bag of chips. I have made her life full of awareness of the things she CAN’T do because of CF and not focused on the things we can still do, limited, but still there.

Richard and I have realized she feels alone, different, and set apart. We wonder if she feels punished? She lets us know when she is frustrated with her to do list that centers on CF. We have failed her, even with the best intentions, we have allowed fear to dictate how we approach CF.

Fear, that ugly beast has been the one steering the boat.

Fear finds it’s way into my heart, mind, and soul. It doesn’t need to break down walls, it doesn’t need to look for shaky foundations, it knows just how and where it will find a door willingly open to it.

I found myself, lying in bed, crying, getting out the things that have been wrecking with my life. I dried my eyes, after my uncomfortable episode of emotions and went and hugged her, kissed her forhead, kissed the small of her neck, and told her I loved her, just to again be reminded as I licked the salt off my lips, that found their way on there from her body expelling it before it can do what its suppose to do, that she is different. She has been asked to fight a fight that isn’t fair and many times by her very own mom.

I found my breath taken away yesterday, I fought the nagging my husband gave me when asking what was eating at me. I fought saying the words out loud. In just a few jumbled words, my husband found out that the grief I had was because of remorse and guilt, flooding the walls of my heart because of the death of a little girl over the weekend who lost her battle to CF. Just 6 yrs old. Screw you CF!!! To see that she left behind a massive void in her two sisters, a brother, and faith believing parents’ lives, the very makeup of our family, destroyed me. Her parents called on their friends, family, and anyone pulled to their daughter’s story, to pray as she battled the many different ways CF plagues a person’s life.

Her battle began, lingered, victories came, and they praised God.

Her health declined in a blink and they waited for victories with no hope, but they praised God.

Her life ended without being able to say goodbye, and they praised God.

So this friday, March 7, as her family places her body in the ground they do it with the knowledge that their child is being held in our maker’s arms. They do it knowing that the difficult road she walked for the last 6 yrs is over and God is saying “well done”. They have asked people to wear purple on friday. In remembrance of their child and all those fighting CF. Some are going to wear purple with hearts embittered with anger, some are going to wear purple with fear dancing around them as they look at their own CF family member, and then some like the Harney family will wear CF because of the hope we are fighting to hold, the faith that is tested with each wave of CF and the promise we have that the story God has written for Ezzy is perfect.

As i drape the dark purple shirt over my head, I will begin to fervently start calling on God to make Ezzy’s story EPIC, life-giving, and so long that it would need to be a book series. As I drape the shirt over my heart, I will ask God to teach me to let it all go, to stop telling her to suck it up, since I’m sucking it up, but instead say, “I know this is hard baby, how can I help you?” As I drape it over the little life growing inside me, I will pray that God is faithful in giving her another sibling to stand beside her as she fights to be a survivor and not a victim.

If you feel it pressing on your heart to join us friday, let me know! You can send a FB pic, text me (9078210204), email me (sarahmayharney@gmail.com) or stop by if you are healthy. She loves it when we wear our “Ezzy shirts”, she smiles when we tell her its ALL for her. I want her to know she isn’t alone, I want her to know that what is being asked of her is hard, but that there are people who love her and standing with her.

psalm139momma

Monthly Archives: March 2014

Happy 6th birthday to my one and only son!

Wearing Purple

Verse 13: "For you created my inmost being; you knit me together in my mother's womb"