What’s something most people don’t understand?

From the outside looking in, we get it, we know. We understand that it is hard for you to understand.

Our family dynamics are different; they have been since that fateful day in September of 1975. Amy, my younger sister, does not fit societal norms. Born with microcephaly due to a lack of oxygen during gestational development, her brain did not fully develop. She is profoundly intellectually disabled, functioning at a 9- to 12-month-old level while nestled within a soon-to-be 51-year-old body.

Most people do not understand how we care for Amy, 24 hours a day, 365 days a year without ceasing. They don’t understand why we choose this path when other alternatives are available. We have experienced the questioning looks in public, the whispers, and the gentle touches of empathy—which we vastly prefer over the smothering expressions of sympathy. What most people fail to grasp is that collectively, as a family, we would not trade having Amy in our life for anything in the world. She enriches our family in ways that we cannot explain. We have decided to provide her the best quality of life possible by remaining in our home, where she is still cared for primarily by our mother (who is fit, spry, and sharp as a tack at almost 82 years old!).

This year, as Amy’s big sister, I have formally taken the reins as Amy’s legal guardian. I do so humbly and am honored that I have been given the opportunity to guide Amy and keep her safe as she journeys through her own soul contract as I journey through mine. We were divinely placed on this path in two very unique human experiences yet united by a spiritual love that surpasses “normal”. Amy has uniquely inspired me and guided me to be the woman I am today, and I am so grateful. Whether anyone understands this or not.