Happy Belated Father’s Day to all of our CS dads! Today, we share the story of Christian Marquez, dad of the lovely and vivacious Olive Mae Marquez, who has been diagnosed with Cockayne Syndrome.
By Christian Marquez, Guest Post
When I was a kid, one thing that I knew that I always wanted to be was a father. I was rather young when I had my first daughter. Navigating through my firstborn daughter’s childhood was tricky but I got the hang of it. When my daughter turned 6 years-old, I had become a single father. After a while I met my wife, Brianna, and fell head over heels for her. It didn’t take very long for us to decide that we wanted to be together and start a family.
I remember a specific car ride home from a vacation with Brianna where we were picking out names for our future children. One name that she had decided on when she was a kid was “Olive Mae”. The name resonated with us. Not long after that trip, we found out that we were expecting our first child together. That first phone call with my then fiancée telling me that she was pregnant filled my entire body with pure joy. I was having a child with this woman who had become my best friend and was going to be my wife.
During her pregnancy, there weren’t any difficulties, but Olive had decided to stay in place (breech) and never flipped facing down. We were told to get checked out during the last doctor’s appointment and soon after that we were admitted into the hospital. Olive was coming a little earlier than we were expecting. We got our nerves under control and waited until the morning for an emergency c-section. I remember that rush of emotions coursing through my body as my wife lay there delivering the baby that she had carried for so long, waiting for the first cry. The first time I heard Olive’s beautiful voice fill the room, I felt a love that was immeasurable.
Shortly before Olive’s first birthday is when we learned about her diagnosis. This was after months of wondering why she was having difficulties in her short life. I remember being at work, in my breakroom, and dissolving into my chair as we were told what she had: Cockayne Syndrome. What is that? How did it happen? How do we help our baby? There isn’t much information about the disease because it’s so incredibly rare. Trying to process and accept what the doctor’s office said might happen to my child drove me to a place that I thought I wouldn’t be able to get out of. The feeling that I can’t simply remedy this, the devouring helplessness, it almost overtook me. I don’t believe I would have been able to climb out of that hole without my wife and her family. The amount of support from her family started to give me hope for our daughter.
Every time I look into Olive’s eyes, I see this little spirit that’s teeming with life. She has so much energy and an unquenchable curiosity that at times gets her into trouble (I wouldn’t have it any other way!). Watching her do things that we read she probably wouldn’t be able to do is what brings me hope, especially how she’s PROGRESSING with her physical therapy and occupational therapy. I will never forget the first time I saw Olive walking on her own. I was at work and my wife sent me a video, the preview image was of Olive standing alone. As I started to watch it and saw Olive walking by herself, unassisted, it absolutely blew my mind and I started yelling out of excitement and cried because of the amount of pride I had for her. I showed all my coworkers the video and just about everyone who asked me how my day was going.
Being the father of a rare human being is the most important role I could ever have. I never want there to be a day where I don’t say “I love you” to Olive or see her smile as she runs up to me when I come home from work. I cherish every moment I have with her. I don’t think about there being an ending to her life as often as I used to because I’m hopeful in my daughter’s advances and in current research that is underway for Cockayne Syndrome. I know one thing for sure. As her father, it’s my duty to show her love every single day for the rest of my life, and that I’ll do.
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To learn more about Cockayne Syndrome and ongoing research projects, please visit riaanresearch.org/research/.