“We have to address the lid, because if we don’t, it’s going to blow, if we address the lid, we can start working through the things that have been stuffed down”
As those words were said, as her eyes met mine with compassion, not condemnation. I immediately looked at the little girl, who sees the world different then other girls her age. She was quietly coloring, getting lost in what she was doing. I wondered “what does she think about this?”
It wasn’t until days later that I started seeing a change in her. If I had not been careful or responsive to the Lord, I could have missed the very small stride she was taking.
This last year has been intense. I feel like I am always saying that, “it’s been the hardest day of my life” or “this has been the biggest trial”. Yet if I were to look back at 2017 with Ezzy, all that I can say is I.N.T.E.N.S.E.
The day that I saw my breaking point will probably be one of the biggest momentous moments in parenting a child with a scary disease for me. The spiraling downfall that happens on 75% of the mornings was in full swing. Me, overwhelmed with the huge responsibility of getting 4 kids to school on time before the preschool doors were closed. Her, overwhelmed with the never changing to dos in the morning, nebulized medicine 1 & 2, vest, pills, bathroom break #2 and then finally getting to the to do list of a normal child without CF.
In the weakest part of me, I parented in anger. I saw the color red. Which invoked the deepest “survival/fighter” instinct in her.
The siblings, stood in shock. Not a single word was uttered after we lashed out on each other. We exhausted the pent up frustrations of CF in our lives to one another.
The car door slammed and I couldn’t help but think “thank God I don’t have to see you till 3:30”.
Minutes after driving away, seeing her slowly walk to the playground, the still small voice that tried redirecting me a mere 15 mins ago, was no longer a whisper, but instead a heart wrenching firmness that came from Godly discipline.
I cried and cried. I found myself on the phone, telling the receptionist, “I don’t know what else to do, we need help, before we break her”
Why is there such shame is seeking out help, especially mental/emotional help? What happened next was such an act of grace.
I received a call, from someone I didn’t know. I was told “I believe I am suppose to meet you, but not in an office, but at a church…I believe you are an answer to my prayers”
As we sat across from a stranger, and two parents that have stuffed and stacked pain, fear, anger and only shared small pieces we could handle to others, unloaded. There we got real. There we took the lid off and didn’t leave anything back.
Ever since that first meeting. Ezzy has been blessed to have a safe place, a place, that she is asked by a trained professional, her daily dealings with CF. A relationship has began to form and a now a voice of reason and truth is able to help unpack the things she has stuffed down.
This year, watching her class go to swim lessons for two weeks about did her in. Her daily journal was filled with words about seeing their wet hair, hearing their stories of the pool or missing out on snacks that she didn’t get to eat while she was home with me.
Thanks to friends who loves at just the right time, Ezzy got to ride in the fire truck, no tagalong mom came. She was sent a care package of art/crafts and was taught how to make a blanket by a patient woman who loves her fiercely.
We talked about the hard stuff as we would drive her to school. She would tell me that it wasn’t fair, but what she finally was able to say, due to the counseling sessions, was that she doesn’t know how to handle it. How she wonders what it’s going to be like when she gets older. What other things will she miss out with her friends on.
I think when they are little the wonderings of adulthood are so heavily laced with an altered reality. Pain, hardships, never ending laundry, bills that show up monthly, hard work environments don’t enter their innocent minds. It’s all, Prince Charming or careers that are shiny and bright that take up the conversation.
When she shared with me, her new discovery of seeing the unknown to be forever impacted by CF, I realized she had lost yet another piece of childhood, that it was robbed.
I believe because of the gift this person has given us to counsel our family in their own personal time, to talk openly about faith, God, the broken world, it has given Ezzy a new perspective on what she can’t escape.
As I read her words on our thanksgiving table cloth, I realized it again, that God has protected her heart. That even when it has felt he is far away and he has not swooped down and picked her up when I thought it was the right time, he has been there laying the ground work for her.
There has been more releases of joy from her, more times in the last few months that I can remember. Like laugh out loud, no hand over the mouth or muffled giggle. It has been real and for everyone to get a ripple from.
I get little notes left for me. What seemed unrepairable, has begun to mend as we address our lids. There are more hugs given, there is a vulnerability to talk and not stuff with each other. As if we have forgotten our broken ways of not showing weakness and not letting people in.
I have seen the power in having a safe place to share your stuff and to be able to own it.
Because somehow, she has decided to own CF. Yes there still have been hard days, days where she just wants to be normal like her siblings and not have to be stuck to a machine. But those days have lessened. Instead she has put her energy into identifying that she has been given this life and she is going to find a way to not let CF ruin it.
After being denied the life changing med, her team has decided to run tests again to see if her body has healed and we can start it. We are patiently awaiting news anyway now and are hopeful that the answer will be yes. But if it’s not, we are all willing to address the lid and own our stuff through it.
Today you are 8! It’s crazy, because you have made me take mental pictures of your life and it seems impossible , because the doctors placed fear and doubt in my heart that shouldn’t have been held onto. I could be angry with them, but instead I am seeing how it has brought beauty. Because I have so many vivid memories of your childhood.
It wasn’t until you were asking your daddy last night about your birth story that I realized, 8 yrs is really long. My brain was in over drive recalling so many events. When you brought up the picture of me crying as I stood over you with all the wires, you looked me straight in the eyes. I believe you needed me to take a step of bravery and own that moment and not stuff it away and shut down. So I didn’t stuff, we talked about how scared I was. But then you quickly moved on to one of your favorite stories. The one that had the nursing staff on the Giraffe floor cheering and giving high fives over your first bowel movement.
Thank you for helping me work though my stuff. Thank you for modeling the healing that comes when we are willing to take the lid off and let the other things be addressed.
Thank you for helping me replace the sad memories with your laughter as you see them in the innocence of a child.
I pray this next year, as you are learning new tools to get you through the tough stuff that you keep your hope alive. That when the fears you have begun to dread about the unknown and what CF will do to your life, won’t define your days. Instead, that they will awaken the survival/ fighter mode that I have seen in you.
Ezzy girl, I love that you watch me. It’s not weird to me anymore, because I pray that as you see me own my junk, that you see I am unpacking it with our Heavenly Father, the wonderful counselor, and he is ready to help you too.
Ezrah May, means “a great discerning help”. I have watched you live these words this last year and am thankful that you are helping shape me into the woman/mother a God intended me to be.
Happy birthday my love, I think it’s pretty special God gave you the gift you have been asking for SNOW!