“I’m sorry, Mrs. Hoy, I wish we had better news for you, but we don’t expect your baby to make it through the night.” Devastation. Loss. Fear. Guilt. Panic. Confusion. Emotions bombarded me in those first few moments of my second son’s life. We were expecting a healthy baby, not the one who stopped breathing in front of me, the fresh pink fading into a grayness that filled my husband and me with panic.

From these early moments of parenting kids with special healthcare needs, the thing I craved most was information. How did this happen? What does he need? How will we care for him? Who will we need to help us care for him? What is retained lung fluid, what is a “g tube” and why would I need to change it? By the time his younger brother arrived with the same presentation, and his older brother’s seemingly random illnesses and symptoms were also identified as mitochondrial disease, we had created a team we lovingly refer to as “Team Hoy”.

The team consists of the five of us, but also specialists, surgeons, occupational therapists, physical and speech therapists, feeding specialists, nutritionists, paramedics, a phenomenal pediatrician, friends and families who became cheerleaders and supporters, emergency room doctors across the country, nurses, social workers, insurance representatives, admitting clerks, X-ray techs, lab techs, ICU staff and the countless other souls involved in healthcare. The point is, the more we became actively engaged in the boys’ care, the more our need for knowledge was met, the more the care was coordinated and supported our family values and preferences. This team approach empowered our boys to manage the many challenges that have been laid at their feet over these last 22 years. Living with chronic illness is unpredictable, and sometimes bad things happen.

We’ve experienced good outcomes and bad outcomes, and have approached both with the same desire to partner to improve the care of our boys, and ultimately the healthcare system we rely on.