My experience as a special needs mother began ten years ago when my five-year-old daughter was hit by a car while our family was stationed in Italy. She suffered a traumatic brain injury, and it was an experience that changed my family’s life forever. At that time, I thought this was the worst thing that could happen to us. Little did I know that several years later our lives would again be turned upside down when my five month old daughter Paloma began having uncontrollable seizures.
Paloma was diagnosed with Dravet syndrome several months after her first seizure. Now at six years old, she has suffered countless seizures and been to the ER more times than I count. She has suffered the side effects of medicines and experienced an increase in sickness. She has never gotten to experience life as a normal child, yet she is the happiest, most loving child I’ve ever known. Even on her worst days, Paloma is full of hugs and says, “I love you” to everyone she comes in contact with. She is the embodiment of selfless love and she is my example every day.
As a newly single mother, I had to make a decision last year about what I was going to do with my life. I’d been a stay-at-home mother for fifteen years. I was lucky to have been able to finish my Bachelor’s degree and have it paid for with my veteran benefits. Now faced raising my three girls – two of whom are special needs – on my own, I started to explore the idea of becoming a social worker.
I’ve been helped countless times by social workers in my life. Many times while in the ER with Paloma, the hospital social worker has played with my other two children so I could focus on helping the doctors stop her seizures. I also see a social worker weekly for therapy as part of my own self-care, who has helped me navigate many of my darkest days. Because of her help, I am able to continue being a caretaker.
I decided to apply for my Master’s in social work, so I can help others who are in my same situation. Being a caretaker of a child with epilepsy is heartbreaking and the hardest thing I’ve ever done. I want to help other families who are walking this same path, while using experience to help change policies for those with epilepsy in my own community and nationwide. Last year, I helped create a law that would allow Paloma to take her life saving medical cannabis oil to school with her. It was not easy, but I believe I have the passion and dedication to make lasting change and benefit caretakers and those who live with seizures.