How My Sons' Diagnoses Connected Me to the Brother I Never Met
I have always felt my brother’s presence in my life. He was born in May of 1962. There are no pictures of him or any stories about him because he only lived for five days. I was born, 6 years later, in October of 1968.
I remember going to the cemetery to visit the family graves when I was a kid. My brother, Ronnie, was buried with my grandfather. He did not have a headstone and my parents never talked about him. I was curious. I wanted to know more about him, but they always shut me out. His death was a taboo subject in our home.
I can’t imagine the pain my parents experienced losing a child.
I often wonder, “How in the world, even as a teenager, could I feel his presence in my life?” Looking back I believe Ronnie was trying to tell me something that would change my life forever.
My first son, Julian, was born and diagnosed with severe hemophilia, a bleeding disorder, after his circumcision. I had no idea what hemophilia was or how it was genetically linked. When he was brought back into the room after he stopped bleeding, my mother said, “What if he has hemophilia?”
Tragically, my mother died five weeks later and I was never able to ask her why she mentioned hemophilia.
When I was pregnant with my second son, Caeleb, I expected him to be unaffected. I had always assumed Julian’s hemophilia was a result of a spontaneous mutation, but when Caeleb was diagnosed with severe hemophilia, I was reminded of my mother’s earlier comment about it.
After making this connection, and making some phone calls to relatives, I realized that my brother died from a head bleed. He was born in a small, southern Texas town that may have not even understood what his condition was. I’ll never have the answers I so desperately want, but what I know is that my brother was here on this Earth and his life mattered.
I want to believe that he would have been extremely annoyed because his little sister always followed him around. He would have been the one I ran to when a guy broke my heart, and the one cheering me on at the Friday night football games at halftime. And when my sons were born, I imagine he would have been at the hospital making sure that I was OK. He would have loved his new nephews and provided me with a shoulder to cry on when they were diagnosed.
I dream that he would have grown into a strong, healthy man who did everything he could to live with hemophilia, even at a time when treatment wasn’t what it is today. The few that knew him have left us, and his legacy could easily fade, but today, I proudly say that Ronaldo Julian Campos was my brother.
He lives on in my heart and in the lives of my sons. And for that, I am blessed.
A version of this post originally appeared on Hemophilia Federation of America’s website.
The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Want to celebrate the human spirit? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.