Sunday, August 28, 2011

Beads of Courage

This week, Sisters by Heart profiled our family's experience with Beads of Courage, an incredible program that reaches out to families of chronically ill children. You can find out more about the program and Sisters by Heart (and MAKE A DONATION (yes, hint, hint!) here. I am also including a copy of the blogpost below...we're so grateful to Sisters by Heart and all of the organizations who reach out our special little bravehearts!
Last week, we introduced you to our Top 10 list of Kindred Hearts - organizations that love and support our HLHS warriors and their families. This week, we're focusing on one of those organizations, Beads of Courage.
Beads of Courage Beads is a 501(c) 3 tax-exempt organization dedicated to helping children with serious illness record, tell and own their stories of survival. Since March 2005, Beads of Courage has diligently transformed the treatment experience for children coping with chronic, life threatening illness through their arts-in-medicine programs.

Beads of Courage helps you to tally the number of different procedures and surgeries your child has experienced and will send you a corresponding bead for each individual procedure, along with a lanyard personalized with your child's name. For instance, the bead representing heart surgery is a white square bead with a red heart on it. My son's necklace has 3 of those. The bead representing echocardiograms (my personal favorite - the bead, not the procedure) is a glow in the dark sphere. My son's necklace has 36 of those.

There are a number of hospitals who participate in the program and will help tally your beads for you, but my son's hospital did not, so I didn't enroll my son and start tallying his beads until he was 17 months old, almost a year past his Glenn. I tallied the number of surgeries and procedures he has had on the special tally sheet they sent me and emailed my totals to a Beads of Courage representative. Then I excitedly waited for them to arrive. When they did, my 4 1/2 year old heart-healthy daughter and I immediately began stringing them together...all 677 of them.

If I thought tallying them was emotional, stringing them together was even moreso. I expected to be impressed by the end result, and I was.
But this was just the first string. It was quickly followed by 4 more.
My son's 5 necklaces represent 2 cardiac catheterizations, 9 central line and PICC placement & removals, 6 clinic visits, 94 nights spent in the CardioThorasic ICU, 15 days spent on TPN, 25 dressing changes, 36 echocardiograms, 2 emergency/unusual occurences, 5 antibiotic infusions, 43 nights spent in the step-down unit, 75 days spent in isolation, 4 different instances of learning new medications, 135 IV Starts and blood draws, 150 CT scans, EKGs, MRIs & X-rays, 5 tranfusions, 22 NG, chest tube & foley catheter insertions and removals, 21 days spent on a ventilator, 50 visits from PT/OT/Nutrition, 3 extraordinary experiences, 3 cardiac surgeries and 5 hospital discharges. Pretty amazing for an 18 month old. And Beads of Courage found a way to represent all of that in 5 beautiful necklaces. What a wonderful organization!

After helping me with my son's necklaces, my daughter really wanted her own. I felt so bad having to tell her no, that they were only for children who had been sick in the hospital (healthy siblings tend to hear that kind of thing a lot and I felt bad having to tell her again). Then I learned from my amazing Beads of Courage representative that they have a new sibling program as well! It's on a smaller scale (only 25 beads), and there is a small fee, but she would get a lanyard with her name just like her brother's, the beads would each hold a special meaning and she would receive a card explaining the meaning of each bead. I couldn't sign up fast enough!

Her package arrived today and she immediately tore it open. I was completely impressed by what we found inside. The package included the promised lanyard with her name on it...
and the cards explaining each special  bead...
She immediately strung them all and couldn't have been more excited! Clearly, my daughter is a fan of Beads of Courage.
So am I. Thank you, Beads of Courage, for your thoughtful support of our special warriors and everything they've been through!



  1. That is neat. They do not do beads of courage for heart patients at our chidlrens hospital. Wished they did!

  2. Hi Amy,

    Thanks for featuring Beads of Courage so beautifully! We are honored to support your children in this special way!

    Ashley Lapointe
    Beads of Courage Program Manager

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