Finding Joy

Last night, I said bedtime prayers with Charlie and when I gave her a hug, she didn’t let go. Next thing I knew, my eyes were filling with tears and I had no clue as to why. I just held her close.
I decided it was because I had a really stressful spring break and wasn’t feeling good, and her sweet hug just got to me.
After we said goodnight, I walked into the living room and curled up in my favorite corner of the couch. I glanced at Facebook on my phone and saw 2 “On This Day” photos that suddenly gave new meaning to the hug and the tears.
The first one was of a friend holding Charlie in the hospital just hours after a traumatic experience.
The day before the picture, Charlie had undergone an open lung biopsy and bronchoscopy. She had been poked and prodded in the hospital for 5 days and still no answers on what was going on with her lungs. When I left the night before to spend time with the other two girls and get some sleep, she was resting and her Daddy was right next to her the whole night. I had breathed a sigh of relief when I got there Saturday morning and saw she was happily playing with ice chips while sitting in her crib.
She had a chest tube in and it was connected to a pump to make sure there was no fluid in her chest cavity. I had been there about an hour and the playing with ice chips graduated to wanting to stand, walk, get down, etc.
This chick was beginning to show us just how strong she was.
As I was trying to get her to sit and find a different toy to distract, she jumped up, squealed and stepped on her chest tube that was draped through the bars of the crib.
The next few seconds felt like a lifetime.
The tube disconnected from the piece that was surgically attached to her.
She took 2 gasping breaths and I reached over and covered the one inch plastic hole sticking out of her side, while the other hand hit the nurse call button.
Thankfully they answered immediately and 2 nurses came running in, grabbing sterile instruments that unbeknownst to me had been taped to the end of her crib.
Within seconds, the tube was clamped, vitals were checked, and emergency X-ray was on their way.
Once they gave the all clear, I held Charlie close and I cried. I couldn’t stop shaking. Fear was suffocating me as my sweet girl listened to Sesame Street songs over and over on my phone.
My friend Tamy came up to just be with me. At one point, she demanded that I let her hold Charlie and that I just go walk it off.
I think I maybe walked the floor a time or two, and when I returned I captured the picture that showed up on my Facebook yesterday.
6 years ago to the day was the beginning of what would be a very difficult road. While Charlie was sleeping peacefully in my friends arms, somewhere in the hospital a piece of her lung was being examined by a pathologist who would ultimately type with words Langerhans Cell Histiocytosis.
We didn’t get the diagnosis for 2 more weeks following her hospital discharge. The clinic forgot to call and to be honest I had always heard “no news is good news”!?? Every other test they ran the 7 days she was inpatient was negative. I thought this would be the same. Maybe an infection gone wild that was now cleared up? We had no idea.:…
The next several months I hid anxiety the best I could, put on a brave face because “I had no time to break down”. When I wasn’t physically caring for her, I was tending to our other 2 darlings who were oh so full of energy!
I found over the next few years that it’s was my health that ended up taking the biggest toll from the stress, worry and lack of sleep.
So back to last night. I think somewhere in the depths of a tired Momma brain, I connected those dates last night. Just like that day six years ago, I held her and I cried. But these were not sad and anxious tears this time. They were like my heart is bursting with a crazy amount of love for this child tears!
I have a stone that a chaplain gave me a few weeks into her treatment. It was smooth and round and had one simple word. Joy.
After hearing our family and Charlie’s initial story, he pulled the stone out of his pocket and said he usually had the patient pick which word stone but he wanted me to have this one.
He then quoted these verses…
“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.”
James 1:2-4

“Weeping may last through the night, but joy comes with the morning.”
Psalm 30:5
The second post that popped up yesterday was a video of Charlie playing a xylophone with all the happiness and crazy cuteness one could imagine. This was exactly 4 years ago to the day, and the eve of her last dose of chemo through her port.
Joy. Hers was the contagious type.
Although she relapsed within a year, and endured an additional year of lots of yucky shots full of chemo in her leg, the joy remained. You can ask anyone who was around her in those days.
So last night I was reminded of the sad.
I was reminded of the worry.
I was reminded of the pain.
But most of all, I was reminded of the joy.
If you are in a season of night in your life, I hope and pray that hearing a bit of Charlie’s story will give you hope.
Look for joy. It may not look like what you think joy or happiness or an answered prayer looks like.
But I promise you it’s there.
It may even find you at the end of a rough week, in tears with tiny arms wrapped around your neck. IMG_3170

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One thought on “Finding Joy

  • May 29, 2017 at 12:25 pm

    Enjoyed reading this. It was an encouragement to me as each day I am faced with End Stage Renal Disease, as well as the reality that without Dialysis three times a week which is not pleasant being stuck with big needles in two places, and sitting there for four hours each time, that I will die an early death. I’ve learned through this that the Lord is every faithful to carry me as it sounds like he is doing for Little Charlie and your family. God Bless all of you for your endurance!


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