by Coralaidee Jimenez Burgos, Family Representative with The Puerto Rico Department of Health

Welcoming Felix

When Felix was born, my soul was filled with joy, a love so strong it’s hard to describe. He was my lifelong dream come true. But my joy was short-lived; Felix was sent to NICU. I questioned God: Why me? How will I get through this? What am I doing here?

This was my new life. At the NICU, I heard medical terms I never heard before. I felt a mix of emotions, wanting to talk to the doctors but dreading their news. The pain was unbearable; my body hurt from crying. I locked myself in the bathroom, screaming into a towel until I fell to the floor, exhausted because I really felt I was losing my soul. After 10 endless days, we took Felix home and everything began.

At first, there was fear, suffering, and daily crying. I was angry at everything and everyone, and I felt immense guilt. Over and over, I asked, why me? How will I care for this child? What now? My days were consumed with appointments and therapies. After a few months, I left my job. I can’t remember when I stopped crying, but one day I realized I hadn’t cried for days. A life-changing moment was when I stopped asking why and started asking what for. I realized I was born to be his mom. I believe that when God created me, He had Felix in mind; he was my destiny. I asked God for forgiveness and forgave myself and others, because no pain or love compared to my love for my son. I found the strength to keep going.

Speaking UpCoral and Felix

My life was hectic with appointments and therapies; in a focus group during one of them I asked myself what am I doing here? I didn’t leave because I was too far from the door. At the end, I thanked the workshop leader, who mentioned needing a mom to work for Title V. I interviewed and was hired to work in the CSHCN Program as a Family Representative. Again, I asked what, why and how?

For years, I went to the office just to do something and talk to someone. My tasks were printing papers, making copies and contacting parents. Years later, with a new supervisor, I was asked to participate in the Title V Grant Review, my first invitation to something official. The “feds” were here for a meeting. They took us all in several cars. The visitors were all in one car, which I imagined as the presidential car, only for a program director (my previous supervisor) and grant reviewers.

We arrived and those from the car sat in front at a table while the rest of us sat in the back, almost in a corner. The meeting began with families sharing their concerns (they were not happy), the translator struggled, and we weren’t looking good. I stood at the front of the room and began to translate, clarifying the difference between programs, and little by little, those who were hidden in the back ended up in front next to the new self-appointed translator – ME. This surprised everyone, including myself and especially my boss.

A Car Ride That Changed Everything

This ride in the car changed my life as a family leader forever! At the end of the meeting, I was told that the “feds” wanted to talk to me alone. Someone was able to get my former boss out of the car, and I managed to get myself in. Once again, I asked what am I doing here? Why me? How do I answer? This ride that changed my life (and for which I’m forever grateful!), was not an easy one. It was 2-hour drive during which I was asked about my role, my life, my son, and if I wanted to be a Family Scholar and Family Delegate for AMCHP.  For the first time in my job, I felt seen. That day, in the car, I stopped feeling invisible and began my path as an empowered Family Leader. I started traveling and meeting family leaders, MCH professionals, and networking with colleagues nationwide.

Learning about Title V was not easy. The five domains, the “30-30-10 formula” (30% spent on CSHCN, 30% on children, no more than 10% on administration), “NPMs, SPMs” – it took me years. But I kept asking, reading, accepting invitations, many times inviting myself. This wasn’t about me. It is about the ones with no voice and opportunities. This one experience opened many doors, and it even took me to receive the MCH Directors Award in 2018, standing among accomplished professionals, recognized for my work after Hurricane Maria in PR in 2017.

I have traveled a great path, one that others created and where I try to leave footprints. I traveled a path where many believed in me more than I did. I forever thank them for giving me opportunities that changed our lives. Today, there are other mothers working at CSHCNP as Family Advocates, and I oversee them! There are still doubts, but also the certainty that God is with me, and everything was and is for Felix, my reason, my teacher, my connection to heaven. Thanks to him, I am telling my story, urging you to take chances and surround yourself with positive people. This is more than a job; it is my son’s life and of all those privileged to have been born like him. Everything is achieved with respect and, most importantly, with love.

Find Your Ride

I encourage you to do everything with commitment, thinking about your children. Take chances; find your ride in the car. To professionals, I ask the same but do it thinking about those who did not ask to have a special condition and who need all and each of us. I don’t ask you to love them or even like them; I ask you to give them what they deserve and have the right to for the simple fact of being alive.

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Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

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