Courage is defined as strength in the face of pain or grief so it’s entirely appropriate that Beads of Courage are given to children going through medical suffering.

In children’s hospitals across the nation, children get a bead for each different test, surgery, scan, procedure, medication, or hardship they face during their treatments. There are programs for Childhood Cancer and blood disorders, NICU, cardiac conditions, and chronic diseases.

When a child is older, the incredible Child Life Specialists are able to use these beads to explain what is happening to them. They bring their name letters in and let the child start their necklace. It’s an incredible way for kids to have a visual and tactile way to process what is happening to them.

For younger children, like Sophie, it’s a way for moms, like me, to keep track of what is happening. I am by nature an organized person so these beads were so therapeutic to me. Everyday I wrote down what Sophie went through, charter each thing in her head journal, and then requested the beads from our nurses every 21 days when the journal was full. Then I’d sit-usually late at night while my baby slept-and I spread out her ever growing necklace. I’d dump out the bag of 3 weeks worth of beads and start sorting. I put each color bead in its own pile and then made patterns. Yellow, black, white, rainbow, blue, bumpy…repeat. Green, pink, red, star…repeat. And on and on I’d go until I ran out of beads. Then I’d tie the necklace back together, walk over to Sophie’s bed, and hang it up on her IV pole….A few feet longer than it had been the day before.

I did it every 3 weeks for 7 and a half months. It helped me process what was happening. It told her story. I wanted every single thing she went through documented. It was her testimony. The physical proof of how brave and incredible she was being. I also wanted it to be able to show her one day when she was big enough to understand. These beads were so much more than a necklace.

In December when we found out Sophie was terminal and we discontinued treatment, I almost stopped keeping track of her beads. I thought, what’s the point? She was dying. I would never be able to show her the beads. I’d never get to sit and tell her what each one meant and how she had overcome all of it. I’d never get the victory picture of her healed and whole, covered in thousands of beads. What was the point?

My mama, Sophie’s Mammy, helped me see that there was still a point. We didn’t know how long she had left but, however long it was…she still was earning those beads. She was still going through one of the hardest things a child could ever go through. Her story still deserved to documented. She knew I’d want that story-the complete story. She knew ‘what’s the point’ was my crushing grief talking.

So for 13 more days, I kept writing down each bead and giving the journals to our nurses. One precious nurse brought them in one night with ‘God is Bigger’ beads for me to add to her necklace.

And on that final day, January 4, 2018, Child life searched the entire hospital for one bead. The last bead. The butterfly.

 

Sophie was sick for 232 days. She has 1,344 beads. Her necklace weighs 3.5 pounds and is 45 feet long when stretched out. She had:

10-heart shaped-PICU

200-yellow-nights spent inpatient

26-red-blood or platelet infusions

116-Black-pokes with needles

181-white-chemo doses

137-rainbow-PT, OT, Respiratory, Speech

21-Acts of Courage

130-bumpy-days spent unable to walk…stuck in her bed

56-light green-X-ray, CT, PET, MRI, ultrasound

81-lime green-days with fever or neutropenia (no immune system)

28-Tortoise-spinal Tap or wound care visit

10-beige-Bone marrow aspiration

3-Orange-PICC placement & removal & port placement

13-magenta-ER visit or ambulance ride

76-purple-antibiotic infusions

35-times under anesthesia

20-aqua-tube placements (NG, G-Tube, Chest Tube, Foley Catheter)

52- grey-dressing changes

5-smiley face-hair loss/growth

5-Star-surgical procedures

125-light blue-mouth care

6-blue-clinic visits

3 fish- an upstream battle

1 Butterfly- flying free

And she earned every…single…one.

Sophie’s beads tell her story. They tell of her bravery. They tell the excruciating journey or childhood cancer. And while I can’t ever sit with her and tell her about it…I CAN tell the world. I can tell anyone that will listen because, it’s her story, and it matters more than almost anything else in my life.

My Brave baby, I’m so proud to be your mama.

#SophieTheBrave #DoMoreForSoph #GodisBigger #OneDayCloser #BeadsofCourage #ChildhoodCancerAwareness #MoreThan4 #GoGold