Have you ever had to go into a situation that had your logical and irrational sides of your brain at war? Yeah, those moments…they seem to make you evaluate what you believe to be true and also place you into situations where you have to decide if a fear has validity. It always comes down to a choice, a choice that you have to make.
I will admit, I was not in a good state of mind entering another procedure room, having another large needle invade the safe little home that I have been slowly growing for our precious number 5. I have seen prayers go unanswered, I have witnessed loss when you least expect, but most of all the new OBGYN decided to freak me out by telling me a scary story of an amniocentesis ending badly…why on earth He would say it to a pregnant woman still baffles me. I had done the research before, understood the risks, but again was faced with this decision being made for me. High risk, history of genetic mutation are all on my medical chart. The unknown and Ezzys entrance into the world that required an airlift to Seattle and an entire team working to save her life now impacts her mom’s prenatal care she receives on a remote Alaskan island.
I had very little sleep the night before, we did our best to get to bed early, knowing we would need to be up and on the road by 7:15 at the very latest.
Thankfully the city traffic wasn’t horrible and we arrived with a few extra minutes to spare. We went through the consults, talked with the genetic counselor, you know the “will the results of the amino determine your decision to proceed with the pregnancy” talk. After sitting through those talks, angry at a world that allows murder to take place on innocent souls that have done nothing wrong, I gathered up what little strength I had and headed to get my blood drawn. The last step needed before getting my amino.
I sat in the cold phlebotomist’s office, btw, why are their offices always cold? I handed over my arm, silently talking with God and laying down my anxious thoughts at His feet. I looked up after the vile had been filled and glanced at the name tag of the person who managed to poke me with little awareness to my stubborn rolling veins. I like to look at people’s name tags, something a pastor encouraged us to do in a sermon. He reminded us many times people who wear name tags work in thankless jobs, he told us to read their tags and say thank you followed up with their name. I did this out of habit, but suddenly realized I had been given a divine message from my Abba Father.
The name of little Harney #5 is unique, I doubt a person could even think we would consider this name. I’ll admit, we have kids with unique names, but this one we struggled even finding in a baby name registry. As God would have it, the person drawing blood at the hospital had our child’s name as their last name. I smiled, thanked my vampire and told them they shared a name with our little gift. They expressed shocked, mentioned it’s not a name they have ever heard to be given as a first name and then asked why we chose it. Then, right there, I took the opportunity that God had designed to happen that day. I shared the meaning, the scripture passage and why this name is so precious to us. On the 7th floor of Swedish hospital, a phlebotomist was given a condensed salvation message.
Honestly how many times do we really take every opportunity to share the Gospel in everyday life? Me, I will absolutely say I get timid, afraid, let my head get in the way. But on March 24th, through the power of the Holy Spirit I bodily proclaimed Jesus Christ to someone who has drawn blood from countless women who have decided the sanctity of life was not important enough to save their child that would enter the world in a different package then they expected…
The amino went well, it was uncomfortable, but not like Ya’el’s and I left feeling completely covered and protected. How could I not, God had been busy that day, reminding me that he goes before me.
Well, those results that came from the blood draw and amino are in…
I was standing in the kitchen after a quick grocery store trip. Bags of food needing to be put away and a land line ringing, something I tend to ignore more then I should. Then my cell rang, good Lord, who ever is calling sure needs to talk now. I grabbed my phone, saw the Seattle area code and thought, “huh, wonder what this is about”. It was too early for my results, they said 2-3 weeks…
“Hello, are you still there?”
As if someone snapped their fingers I replied, “yes, sorry, I just wasn’t expecting the results yet, isn’t this too early?”
I was told the test was taken, sent off and processed at the most perfect time. They verified and knew this was in fact the answer we had been preparing for since the day we found out life was forming inside me.
After Richard and I talked, I told him it was heavy on my heart that we talk to Ezzy first, one and one, no siblings and let her process it with us. Thankfully my mom was free and we took her out for some icecream.
As her head sank to the table, eyes drawing it to the floor and shoulders rolled forward, I knew why God said, she needs you to talk to her, just her, no one else around…
“Awe, but why?…I don’t want to be the only one with CF…it’s lonely”
During my pregnancy with Ya’el her little heart thanked God for her health right before the amnio, she claimed health with her untainted childlike faith.
This time, after a trying year with a growing and maturing understanding of Cystic Fibrosis, her perspective has changed.
Ezzy is having a hard time, I mentioned it in her blog for her 6th birthday. The emotional side of CF is weighing her down. She is fighting therapies, she sets the mood for the entire day and family as she is holding her power over us. Her brother tries to get the vest on her, Ya’el brings it to her, Kyre gets Candy, they all sit around her and she still fights it to the final straw. Her recent sickness meant 6 days of missed school, therapy 4x a day, I.e. Drill sergeant mom enforcing what is not negotiable in our home. 6 days away from friends, 6 days feeling like crap, run down, coughing up green mucous and seeing everyone else in the family carry on has left a massive chip on her shoulder.
We were driving home from school on Friday and as I pulled into the driveway Ezzy said “I don’t want to go to heaven, it will be lonely, you guys won’t be there”. Thank goodness the car was in park, I might have not held it together, I felt all the air exhale out of my body and was stuck inside my head and heart going “what do I say?!?…how is she afraid of Heaven…I am failing her…she knows CF means mortality?!?!…Lord, please”. As my lungs began to fill with air and I saw two little dark brown eyes looking at me, I heard an 8 year old full of more wisdom and faith then his adult mom. “Ezzy, don’t be scared, Ken will come find you”. Heaven, heaven is tangible to my 8 yr old because of the loss of my mentor, but Heaven became tangible in a little heart, speaking out of fear that day, because of a loss she could understand.
I have been thinking a lot about this conversation. Many questions about how to help her process this understanding. We don’t talk about the death part of CF around her and if we have it is so coded with big words that aren’t used regularly around her.
Today I asked myself, how do I prepare my child for death? Morbid-trust me-but Ezzy is like me, she has to process things. When families have lost their CF children, it took them by surprise. That cold that turned to pneumonia that turned to lung exasperation to death left them without a chance to fully say good bye or prepare their child for that moment. I don’t want that for Ezzy. I want her to long for her inheritance, a life filled with no more sickness, constant joy, but more importantly an eternity with our King Jesus. I want her to face the hardships with a faith that James 1 talks about it. I want her to take the trials she is asked to go through and turn them into testimonies of His glory. I want her to live courageously for Christ, sharing her faith with her friends and anyone she meets. I want her to not waste a moment on earth and believe she is truly an ambassador of His Kingdom.
That’s a lot of wants and dreams for my little girl. Yet today God reminded me again, “Sarah do you remember weeping next to her in the NICU, begging me to let you see her first steps, go to kindergarten, get her heartbroken, graduate from highschool, get married…that list Sarah, I AM fulfilling it”
So as we are finding a way to breathe a sigh of relief in the health of our newest baby, we are also reserving our Joy to ensure Ezzy knows when she is frustrated or mad at her lonely life of being now the only 1 of 7 Harneys to have CF that she will come and talk to us. I am praying that God will give me wisdom, holy discerning wisdom to impart to a child who has reasoned in her mind she is going on before us. I am praying that Richard and I, along with the help of any of you who want to speak truth into her life, will renew a hope of Heaven in her black and white little world.
If you see us and bump into us and mention the results of the testing we ask that you come and rejoice with us but with reservation and an awareness of a hurt little heart that is trying to figure out why she has been set apart yet again. We know this baby has come to be another needed support crew member in Ezzy’s life. Another cheerleader to help with therapies and medications, another family member to take a shift at the hospital, another person to surround her when she has to be isolated because of CF. This baby was created for a purpose, just like their big sister had been.
Ezrah May, I am thinking about and praising God for the nurse that came and stood over your bed they day we found out you were going to be going home, shocking the medical community with your miraculous healing after surgery. As she held some charts in one hand and gently stroked your head with her finger, she looked up at me with a warm smile, eyes filled with wisdom from her own health battle she went through with God’s hand over her life and she said “Ezrah May, I have a verse for you…For I know the plans I have for you declares the Lord, they are plans for good and not for disaster, to give you a FUTURE and HOPE” Jeremiah 29:11. That day baby girl, a stranger and yet a sister in Christ spoke God’s truth and promise over you that day. May we both hold on to the many ways God has made sure to let you know you were created for this life.