Carmen, a Rare Disease Angel
Carmen was unique. When she was born in 2018, her diagnosis was so rare that there was no name, no context, and no record of any other human to possess her anomalies.
As I sat next to her hospital bed for 6 1/2 months, I used writing to process all of the unique, special, and different things that Carmen's medically complex life encountered.
I dreamt of the day I would publish Carmen's story- A story of the little girl who defeated every odd, of how strength was defined beyond physicality, of how miracles truly existed, and how she was one.
And when Carmen died, I thought that story was over.
My husband, Nate, collected my many writings, put them chronologically, and said Sydney, "Here is your story." And when I read it, I found a family who defeated every odd, I found stunning strength within the community, and I witnessed abundant miracles. I saw Carmen reach tiny milestones the world never told me could be victorious. I experienced moments of celebration that most cultures would choose to avoid.
I learned to love- little- because when we love the little- the insignificant, the mundane- when we bring joy into blank corners and inspiration into isolation- when we celebrate the little things in life- we declare their value and worth. A worth that goes beyond ability or success or stature. Love breaks barriers. Love is the language of making miracles. Carmen's story is not over.
In fact, it has been beautifully woven into 954 other families' stories in the last 4 years through our organization, Carmen's Miracle Makers. And maybe one little girl can't change the world, but maybe 954 could. Because we never know how many miracles could be made when we let love in.
🎀 This collection featuring pink bows symbolizes the normalcy and beauty we attempted to provide Carmen in the ICU. May the families that wear these bows- find joy in the mundane and choose celebration every single day.
Laree + Co. Community has generously donated to the formation of care packages we ship nationwide to medically complex families enduring life within the PICU. ❤️
- Carmen's Mommy
Executive Director of Carmen's Miracle Makers
Author of 'And if You Can't', 'Still Fighting', & 'Carmen "The PICU Baby"
