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”