What has been the Worst or the Best Thing About Having a Child with Craniosynostosis by Peggy Chevalier & Mario Perez

At first, we just couldn’t believe that Nicole had been diagnosed with Craniosynostosis. She was already three and a half years old. I happened to find out she had the condition when I went to an appointment with a neurosurgeon, for my son, Oneil, who was born hydrocephalic. I brought Nicole with me to the appointment by coincidence, and when the doctor saw her he mentioned that her forehead seemed to be a little deformed. I thought it was strange that her pediatrician hadn’t noticed the deformity. I felt my whole world turn upside down. Having one sick child was hard enough; just imagine having two. The diagnostic test had been difficult, and I couldn’t imagine what the operation would be like. 

The worst moment for me was when they operated on Nicole. They were operating on Oneil at the same time. Nicole’s operation was really something. The scar went from ear to ear. When she came out of the operating room she was completely disfigured and crying. It really made a huge impact on me and on my family. The good part is that we were able to overcome the situation, even though it was an incredibly difficult time. When all of this was happening I felt very alone, and I’d had no idea that Craniosynostosis even existed. 

I kept asking myself, “My God, why me? We don’t drink, we don’t smoke, we don’t have any bad habits… why me?” After asking myself that question for so many years, I now know that everything in life has its purpose. Now Nicole is 13, she’s completely healthy, and she’s my reason for being, for living. And it’s because of her that I’m standing here now, stronger every day. I’m very lucky. I can look back and see that the bad parts are behind me. They were sad times, but my belief in God helped me through it. He gave me the strength to endure all that pain. I’m extremely grateful for my family. My daughter is marvelous and intelligent. She’s a good daughter, and most importantly she has a great deal of compassion for others. 

If someone had asked me then what I needed during that time, I would have asked for someone who could tell me about the condition and could give me the emotional support that I needed. Now I’ve become one of those people that I wished I’d had in my life back then. I’m happy that, through the Jorge Posada Foundation, I can educate and give support to the families in Puerto Rico that are dealing having Craniosynostosis in their lives. I’m very proud of my work as a mentor for the Foundation. 

Today, all I ask of God is that he gives me life and health in order to continue being here for my children until they can be on their own.