SAN ANTONIO – As we consider February’s American Heart Month activities for good heart health, a group of parents would like for you to also be aware of their battles fought by their children with heart issues.
University Health has begun a special program just for these pediatric families called Beads of Courage.
The Nelson family joined that program back in July.
“It’s pretty long, longer than you would think. Two weeks,” said Kara Nelson of her family’s string of handmade beads that represent her two-week struggle with heart issues after birth. She continued, “I wouldn’t trade those two weeks for anything in the world.”
There are 118 beads that were gifted to her family, one by one, for each milestone, decision, diagnosis, procedure and more that newborn Mackenzie Jane Nelson experienced in her short life.
Her father Joshua Nelson is proud of that difficult period, saying, “We have beads on there that represent the first time I held her, the first time my wife held her, the first time her brother held her.”
When she died on July 29th, 2021, the family received another bead -- a large glass butterfly to signify the moment.
“It actually represents what we feel. It’s the heaviest emotion in the whole process,” said mom Kara.
Beads of Courage came to University Health nine months ago. It’s a nationwide organization currently at children’s hospitals across the country and is coordinated by the Child Life Department at University.
Child Life Specialist Jessica Luna has been at University for 14 years and says there are hundreds of beads for an assortment of moments that a family or child will go through in the pediatric heart treatment.
For example, a rainbow bead is for a therapy session, a fish bead is for a child who has had an upstream battle or challenge, and a smiley face bead is for a special accomplishment.
Luna said, “There are special beads for each and every thing that a child goes through, whether that’s just an overnight stay in the hospital or an x-ray.”
She says for those who have lost their child, the beads help the grieving process for the parents and siblings.
The Nelsons have a special bead for their act of courage, making the difficult decision to accept that there was nothing more that doctors could do to save her. Instead of it making them sad, it’s something they’re proud of.
Luna says that having that tangible proof of the struggle for good heart health, whether it’s a day or years is good therapy.
“The moms and dads are able to see, we made it through this, we did this. You know, I had a fighter and we got through this together as a family and that’s remarkable,” she said.
Beads of Courage is available to any family with a child going through pediatric cardiac treatments or surgeries.
Each bead is handmade by artists around the country, so each is unique. Some families have a small strand, but others have hundreds upon hundreds representing their journey.
The program itself is funded by donations through University Health and the Beans of Courage organization. Beadsofcourage.org.