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Honoring your NICU journey with Beads of Courage

Articles

Honoring your NICU journey with Beads of Courage

Trish

Former preemie everett with family

I've become interested lately in a program called Beads of Courage - have you heard of it yet? Today, guest blogger Sara Bollinger shares with us her NICU adventures and her personal experience with this inspiring organization. Enjoy


My name is Sara Bollinger. I am the mother to a three-year-old son who is a former 25 week micro-preemie.

Everett arrived weighing 1 pound 13 ounces and spent almost six months hospitalized in our local NICU and at Children’s Hospital Los Angeles (which is four hours away from our home).  During those long six months, Everett battled many complications including: H1N1 Swine Flu, Necrotizing Colitis with bowel perforations, ROP, multiple infections, and required two major bowel surgeries.

Today, he functions as a healthy four-year-old, albeit small for his age and with some minor developmental delays.  We’ve spent the past four years participating in Early Intervention, physical and speech therapy, while also trying to raise him as a typical toddler.  He lives today as a testament that miracles really do happen!

As a parent of a former 25 week micro-preemie, I have often found myself thinking about the day my son will ask about his birth.  What will I say?  What words will I use to explain what happened, what went wrong, what went right?  And how can I make him understand what a miracle he is?  At four years old, I’m pretty sure he thinks that all kids have limbs covered with scars from IV starts, that everyone has an abdominal incision that stretches from one side to the other, and that no one likes having their feet touched EVER...just like him.  He (thankfully) has no concept that he is or ever was different.  But I know at some point that blissful lack of awareness will change and I want to be prepared.

I found myself looking for a way to physically represent our son’s NICU journey.  I wanted something beautiful that would symbolize each of the many challenges he overcame.  I finally came across a not-for-profit organization that aims at helping children with chronic medical conditions express their experience through art. It’s called Beads of Courage and per their own mission statement, they are an “organization dedicated to helping children with serious illness record, tell and own their stories of survival.”  It was just what I was looking for!

In its beginnings, Beads of Courage was geared toward helping children with blood disorders and cancers, cardiac conditions, and burn injuries document their hospitalizations and treatments. Then two years ago, they added a NICU component. Of course, for the NICU children, it is their parents assembling the art rather than the children, but I still feel as if it is serving an important healing role for baby and parent alike. The program works like this: for a participating NICU, each baby is given a tally sheet that has all the various NICU treatments listed (IV starts, blood transfusions, intubations, days on TPN etc). As a nurse or parent does one of these treatments, a tally mark goes on the sheet. For each tally, a corresponding colorful glass bead is earned by the baby, which eventually becomes a brightly colored necklace complete with the baby’s name in beads on it. Each bead tells of a treatment milestone and for a hospital that participates, the tally sheet would be accurate.  For our son, neither of his NICUs participated in Beads of Courage, so I had to estimate how many treatment milestones he had earned. I did this by looking back through our blog posts and the pictures we took while he was hospitalized.  In the end, the tally numbers were overwhelming. His treatment milestones added up to a 17 foot long, 670+ bead necklace!!!

In just holding the necklace, you can feel the heaviness of the beads.  That weight represents the incredible amount of courage and strength put out by our son to survive.  Now I know that when the day comes that he asks about his scars and his birth, I can pull out the necklace and begin to explain things.  It won’t be so scary for him and I won’t be so fearful of saying the wrong thing.  He has a beautiful representation of the things that make him perfectly unique and a colorful reward for each one of his well-earned scars.  That was my main idea in signing up for the program...to quantify his courage, to make it tangible, to give him evidence of the battles he has fought and the amazing things he is capable of.

If you are interested in making your NICU survivor a necklace, visit http://www.beadsofcourage.org.  For participating NICUs, the beads are given free of charge thanks to generous donations.  For non-participating NICUs, parents are asked to make a $25 donation in their child’s honor in exchange for the beads for their necklace.

For more information, or to read our ongoing story, please visit our blog Micropreemie to Miracle.


Please do go check out their blog, Micropreemie to Miracle - it is beautiful. I particularly enjoy the most recent entry "What Dreams Are Made Of."

Thanks, Sara, for sharing your story and your inspiration.

[All photos published with permission from Sara Bollinger. Credits: Robyn Berry Photography, Shoots and Giggles Photography, Ashley Beem Photography]