By Bud, father of Emma, a CHOC patient; and founder of the Squires Guild, a group part of the CHOC Foundation that connects patient parents with each other while raising awareness and funds for CHOC Hospital in Orange and CHOC at Mission Hospital
My daughter Emma, who is 3 years, 4 months and 8 days old, has a list of diagnoses that read like a medical textbook — I’m sure parents of CHOC can relate — but, her main diagnosis is pachygyria. It’s a congenital malformation of the cerebral hemisphere that results in unusually thick convolutions of the cerebral cortex, giving her brain a smooth appearance and giving my wife and I an excuse to call her a “smooth operator.” We also call her “the Kartoffel” which means potato in German because she looked like a potato when she was little. The name stuck!
Since her condition deals with the brain and is so severe, all of her other body systems are affected. She isn’t ever expected to roll, sit, walk or talk. She struggles with multiple forms of epilepsy and is expected to develop more forms. She also has poor swallow control, which could cause her to aspirate on foods or liquids.
We found out about Emma’s condition when she was 7 months old. She had missed a few developmental milestones and then started having infantile spasms. We are thankful that our pediatrician, Dr. Dawn Bruner, is part of CHOC Primary Care Network. She referred us to, CHOC’s Neuroscience Institute where we ultimately received Emma’s diagnosis.
With all the medical support we had (and still have), it was hard to take in the news of Emma’s diagnoses. Even after three years, it has been a continual process of mourning the loss of the life we thought we were going to have as well as a tremendous exercise in learning to love someone for who they are, and not who we want them to be.
There have been more medical emergencies with Emma than I can count, and often during those times, I feel inefficient, broken. Dads are supposed to protect their children, make it all better and make sure nothing hurts them. But caring for Emma has made me learn that I am just a different kind of dad than what I originally thought I was going to be. I am still strong and effective, and most importantly I have allowed myself to be totally me, just like Emma is totally her.
Emma is fearless. Anything she does, whether it’s laughing, crying, yelling or singing, she does with full conviction. She is the kind of person I hope to be like a little more each day. She is my absolute joy, the light of my life. I am but a humble peasant to my Princess Emma and I don’t mind at all.
It is because of Emma that I am inspired to learn new music, read new books—all based on whether I think she would enjoy them. She has taught me that the more time and energy I put into pushing back against and denying the brutally honest reality that she will not live long or peacefully, the less time and energy I have to truly experience life with her. And as her dad, that’s my biggest joy in life — really living with Emma.
My greatest hope is that she knows that she is loved. I hope she finds her life, however long or short it might be and in whatever way she can, to be rich and meaningful — just like she’s made my life rich and meaningful simply by existing.
For more about CHOC’s Neuroscience Institute