Beads of Courage: Defining CDH
Six years ago, my family experienced something that no family should ever experience. I gave birth to my CDH baby in an OR crowded with 14 strangers, watched my baby be whisked away to the ICU, and sat by her bed as she experienced 42 days of intensive medical interventions. She had over ten medicine pumps, five IVs, ECMO cannulas in her neck, and mechanical ventilation. She endured an extended NICU stay, multiple surgeries, tube feeds and wasn’t held for 27 long days. She was dubbed “the sickest baby in the NICU,” and we didn’t know if she would survive for much of her stay. She had 13 MRIs, her first cut given during brain surgery, first plane ride in a medical jet, 800 hours of therapy, and spent 18 hours in ambulances - all before her second birthday.
But she survived. We survived.
Now, six years later, I look at my sweet little girl, and other than a few scars and a VP shunt, it’s almost as if those days never actually happened. Those days I will always remember, she will never remember. I look at her with admiration. She’s my Tiny Hero. The person who made me into the person I am today—the person who showed me what matters in life. The person who taught me how to advocate, love unconditionally, and live life to the fullest, will never fully understand the magnitude of what she overcame, what she endured, or why she is so incredible in my eyes.
Once I heard about Beads of Courage, I knew it was something I wanted to do for my daughter. A beautiful bead to represent every horrible, awful, no good, very bad...yet absolutely incredible, remarkable, wonderful, medical intervention she’s been through. Something to quantify our experience. To validate our experience. Something to help her understand the severity, the complexity, and courage in her journey.
The Beads of Courage represent the weight put on our shoulders. The sheer volume of the decisions we had to make in order to keep her alive, protect her, and create the extraordinary kind of ordinary she became through overcoming CDH.
Still, people question why we would want beads to remember the seemingly worst time in our lives. It’s simple. In every big situation in life, we are left at a crossroads with big decisions to make. Will we let this ruin us or better us? Will we back down, or will we fight? Will we let it define us, or will we define it? We chose to fight. We chose not to be defined by CDH but to grow, learn, advocate, and use our experience to save lives. We chose never to forget the hard time in our life because that gave us our precious daughter. That is what made us advocates, shaped our lives, and taught us how strong we are.
We aren’t using the beads to focus on the past or define us. We are using them to heal from the past, look towards the future, and remind us that from scary, hard days comes something absolutely beautiful and amazing. Both the beads and our incredible daughter. The beads...CDH...none of it defines us. But it helps US define CDH.
What is CDH? It’s every poke, surgery, scan, transfusion, and day in the hospital that is needed to redefine impossible. It’s every medical experience needed to make miracles happen. It’s our experiences, and it’s something we overcame together as a family. And now, six years later, all we have to prove that it ever happened are a few beautiful scars, 1731 colorful beads, and one incredible Tiny Hero.
I love that we use these beads to teach her all about her journey and what she overcame. To show her how much courage she has, how strong she is, and remind her that she can do hard things no matter what she is faced with in life.
For more information about Beads of Courage, visit: www.beadsofcourage.org
Email stories@tinyhero.org to learn about how you can write for Tiny Hero.