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‘JourneyCare gave us time we could never get back’

Jennifer and Miguel Merida have a very personal inspiration for giving back to JourneyCare: their daughter, Kaidence. She was served by JourneyCare’s  All About Kids pediatric hospice and palliative care program and, today, the Meridas give back by spreading the word to help other families, volunteering, and – this summer – they served as honorary chairs of the Virtual Duck Race that raises funds for JourneyCare pediatric families. We are thankful to Jennifer and Miguel for their role in this critical fundraiser and for sharing their story:

How did you learn about JourneyCare to support Kaidence? A hospital social worker told us about the care that JourneyCare could provide. Kaidence, was born with fluid on her brain. Soon, an MRI reveled that her brain did not grow past 12 weeks of gestation and the fluid was where the brain had not developed. With our three other children at home and both of us working full time, we knew we needed medical help with Kaidence and emotional support as a family.

How JourneyCare helped:  JourneyCare provided whole-person care for our daughter: clinical care, massage therapy, and a Child Life Specialist, who helps patients and families deal with the fears and emotions surrounding serious illness and provides coping strategies and emotional support through age-appropriate play, self-expression activities and more. Kaidence also stayed in one the four inpatient facilities when she required around-the-clock symptom management. JourneyCare helped us through four and half years of her care needs, all in-line with our wishes. We faced many medical decisions throughout Kaidence’s life, and the JourneyCare pediatric team helped the us explore the facts and make difficult decisions, including signing medical orders for when Kaidence faced the end of her life. Looking back, JourneyCare allowed us to love our baby girl. We were able to be parents to her and not coordinators. They gave us time with her we could never get back.

What does this mean today? We couldn’t have done it without JourneyCare. While going through something so difficult, you are too close to fully see the larger picture. But JourneyCare connected us with nurses, doctors, and other families that provided vital support. As parents who were not accustomed to asking for help, we realized that the assistance provided by JourneyCare was a great comfort; families can connect with resources and solutions that they may not know exist. In the spirit of giving back, we now volunteer with JourneyCare to help families through some of the toughest times they face and we hope to spread awareness of pediatric care.

To give a gift to the All About Kids program, visit journeycare.org/donate.