By Araceli Kimberlin
I was born and raised in Dallas, Texas. I love my city and couldn’t imagine living anywhere else. I actually live in a house three houses down from my childhood home, where my parents still live. I always say I’m a 1,000% city girl. However most of my extended family lives in New Mexico, which is where my parents met and spent a good portion of their lives. When my parents decided to move to Dallas before I was born, I don’t think they realized how significant that move would be to the health and well-being of their first daughter. They ended up moving 10 minutes from one of the best hospitals in the world for medical help for kids with facial differences.
Growing up, I knew about CCA and often attended the yearly Christmas parties. But my family and I weren’t really involved in the organization. When we found out that our second son Aaron had Crouzon Syndrome like I did, I wanted his experience to be different. I wanted him to have a community where he could feel accepted and where he could feel like others could relate to him and the issues he was facing. I knew we needed to become involved in CCA. I attended our first CCA picnic last September and met so many wonderful CCA staff members and parents of kids with facial differences. It was amazing. Ever since then I’ve looked for every opportunity to be more involved in this wonderful organization.
Thankfully, I knew what Aaron would go through because of my personal experiences with Crouzon Syndrome. As a child growing up with facial differences, life was tough. You can’t “hide” or “change” your differences. Many times I felt like no one could relate to me and what I was going through. No one understood what it was like to look different even though I was the same as they were on the inside. However, I never viewed my facial features as a barrier. I decided I was going to live my life as “normal” as possible and wanted to do what every normal kid at that age did. I excelled in school, I was a dancer, I had a ton of friends, and I joined many extra-curricular activities, many of which I held leadership positions.
Today, my mom and I are unraveling my surgical history after walking through a couple of surgeries with Aaron. I think we estimate that I had about six in my childhood. The first one was when I was nine months and that one was to fix hydrocephalus. My last surgery was at 14, right before my fifteenth birthday or quinceanera. That was hard. I remember taking my quinceanera picture with a slight smile because my jaws were wired shut. I should have probably had another surgery at 18 but after the last surgery at 14 I decided I didn’t want anymore. My parents were amazing in supporting my decision.
As a child, Crouzon Syndrome was just something I had. I had to go into surgeries for it and it was just a part of my life. Having a child with it opens up a whole new world. All of a sudden I have become a doctor, advocate, nurse, insurance bill specialist, protector and so many other things I wasn’t when our first son was born. I remember sitting in shock when the doctors told me they suspected he had it. I couldn’t believe it. It never crossed my mind that Aaron could be born with it since our first son didn’t have it. I was sad, frustrated, and angry. But then I realized the quality of life he would have. It was going to be amazing, because my life is amazing and still is. I know I’m going to teach him to love his life just like my parents taught me. I’m honored that I get to tell Aaron I’ve walked in his shoes. I know what it feels like to have Crouzon Syndrome and I’m going to be there for him.
My hope for my children is that they grow up to be confident, strong men of God. I want the story of their lives to give others hope. I want them to find purpose in their trials and use it to inspire and make a difference in the lives of others.
I absolutely put my hope and trust in Jesus, the one who saved me, accepts me and loves me, facial differences and all. My husband and two boys inspire me to become a better woman, wife and mother. I want to grow everyday and be a better person today than I was the day before for them. I also live my life based on Philippians 4:8 in the Bible. I find joy in life, even in the struggles. There is ALWAYS something to be joyful about.
Part of living out that joy is by spreading kindness. Kindness to me means taking a moment to put myself in the shoes of someone else. If
a person was mean or rude to me I always give them the benefit of the doubt. Maybe they just received some devastating news. Maybe they lost someone dear to them. If someone is happy I want to celebrate with them. One day I will be celebrating and I would love for them to be happy for me. Kindness is a way of life, not just a fleeting feeling. And with everything in me I believe the more kindness I pass out, the more kindness I will receive.